The document discusses services available for Hope, a preschooler diagnosed with Rett Syndrome, and her family, including information about Rett Syndrome, modifications that can be made in childcare, teaching strategies, resources for the family, and local organizations that provide support services for children with special needs like Rett Syndrome and their families.

1. MEETING THE NEEDS OF CHILDREN
AND FAMILIES
~RETT SYNDROME
Maria Christine Mendoza
ECEP 233-063
Lisa McCaie

2. SCENARIO
 Hope is a preschooler who was diagnosed with Rett’s Syndrome.
Her family is exceptionally worried because they do not know the
services that are available for them.

3. NEEDS
 Hope  Family
 Inclusive environment  More information about Rett
 Love Syndrome
 Resources
 Care
 Agencies
 Support
 Services available
 Physiotherapist/Occupational
 Guidance
Therapist/Speech and
Language Therapist  Social Worker

4. WHAT IS RETT SYNDROME?
http://www.youtube.com/watch?v=d2Rv8JLH
85I

5. RETT SYNDROME
 A childhood neurodevelopmental disorder
 Primarily in girls
 Caused by mutations on the X chromosome on a gene called
MECP2
 The first symptom is the loss of muscle tone
 Problems crawling or walking
 Diminished eye contact
 The child will lose purposeful use of her hands and the ability to
speak.
 Compulsive hand movements such as wringing and washing
 Loss of functional use of the hands.
 The inability to perform motor functions is the most disabling feature
of Rett Syndrome, interfering with every body movement, including
eye gaze, and speech.

6. HOW IS IT MANIFESTED?
 a period of normal development between 6-18 months
 normal head circumference at birth followed by a slowing of the rate of head
growth with age (starting between 6 months and 4 years)
 loss of purposeful hand skills at age 1-4 years
 shakiness of the torso, which may involve the limbs, particularly when the
child is upset or agitated
 unsteady, stiff-legged gait
 breathing difficulties (hyperventilation, apnea, air swallowing)
 seizures (approximately 80% have epilepsy)
 teeth grinding and difficulty chewing
 intellectual development appears to be severely delayed, but true intelligence
is hard to measure
 impaired expressive and receptive language

7. CHARACTERISTICS
 Physical (Fine/Gross Motor)
 Smaller than normal head size  Intellectual/Cognitive
 Delayed growth in other parts of  Develop nonverbal communication
the body skills
 Loss of movement skills (motor  intellectual development appears
skills) to be severely delayed
 Atypical eye movements  Emotional/Social
 Scoliosis  Lose the ability to speak and to
communicate

8. MODIFICATIONS

9. MODIFICATIONS IN CHILD CARE
 Large/open space
 This will allow Hope to move freely with or without wheelchair. Since ―up to
50% of children (with Rett Syndrome) are capable of walking‖ some of them
would require a walking device for them to move around (i.e wheelchair).
Even for those who are capable of waking would require a large and open
space because of their compulsive hand movements. Remove any barriers
(foam mats, carpet, pillows, toys, etc) or reposition them in a place where it is
not obstructing her movements. Also, children with Rett Syndrome have the
possibility of having a seizure, therefore, having an open space can diminish
other injuries.
 Custom designed tables
 If Hope is going to be in a wheelchair, tables with comfort curves is needed.
This will allow her to comfortably participate in table activities and have social
interaction during lunch/snack time.

10. MODIFICATIONS IN CHILD CARE
 Adjust the height of the shelf
 Refrain from putting toys/learning tools too high or too low for all the children
to reach.
 Avoid putting things on top of the shelf
 Considering the atypical movements of her hands, toys/learning tools on top
of the shelf may fall
 Put sign language pictures around the child care
 Children with Rett Syndrome lose their ability to speak, therefore, sign
language will be the main means of communication. This will also teach other
children how to communicate with Hope.

11. MODIFICATIONS IN CHILD CARE
 Ramps/Automatic doors
 Ramps and automatic doors will enable Hope to move freely around the child
care and have her independence.
 Pillows on the floor
 Having pillows around the room (without obstructing the walk ways) will help
during seizures. Also, having soft surfaces can prevent injuries from slip and
falls.
 Appropriate toys/materials/equipment
 Stabilize, enhancing and simplify toys/materials around the room so that they
can participate in play.
 Stabilize blocks by gluing velcro on it, so that it stands when they build a tower.
 Children with Rett Syndrome will lose their hand functions., therefore, adding texture
to buttons can make it more accessible for Hope.
 Simplify/reduce the number of puzzles to help Hope complete a task.

12. MODIFICATIONS IN CHILD CARE
 More time for transition
 Hope may need extra help during transitions, therefore, allowing more time
will make sure that she can participate in other activities without the delay.
Use visuals/signals and remain consistent during transitions.
 Staff support
 With the consent from the parents (Form 14), have an staff (specialist for
children with special needs) that can assist Hope through out the day and
work with her one-on-one.
 Label all areas/materials in the room with words and pictures.
 Post a pictorial schedule for Hope and other children to see.

13. TEACHING STRATEGIES
 Incorporate some sign language while interacting with Hope/the children
 Simplify language
 Find an age appropriate book that will help children learn more about Rett
Syndrome
 Have books/audio-visual materials that portray children with special needs
 Encourage daily physical activity
 Prompting and fading
 Be optimistic/enthusiastic/willing to support Hope
 Motivate/acknowledge/celebrate Hope’s success
 Visuals
 First/then board
 Choice board

14. OTHER CHILDREN
 Encourage them to help Hope
 For example: putting on shoes, moving around the room, putting away toys,
and so on.
 Peer modelling

15. HOPE’S FAMILY
 Have a wheelchair accessible environment at home
 Ramps, open space, etc.
 Wheelchair accessible car
 Encourage conversations
 Physical activities

16. RESOURCES

17. RESOURCES
1. Ontario Rett Syndrome Association
2. Holland Bloorview Kids Rehabilitation Hospital
3. Centennial Infant and Child Care
4. Aisling Discoveries Child and Family Centre
5. Adventure Place Child and Family Centre
6. Connectability
7. Children’s Rehabilitation Centre ALGOMA
8. findasocialworker.ca

18. WHO IS ONTARIO RETT SYNDROME
ASSOCIATION?
 http://rett.ca/
 The Ontario Rett Syndrome Association (O.R.S.A.) is a volunteer,
not-for-profit charity for parents, caregivers, researchers, medical
professionals and other interested support agencies and
individuals. O.R.S.A. became incorporated in 1991. Its Board of
Directors is comprised of parents and caring citizens. O.R.S.A.
provides information through a website, a newsletter and
conferences. Support is provided to families regionally. The
association funds Canadian research projects, two Rett
Syndrome Clinics, a resource centre and the Canadian Rett
Syndrome Registry. O.R.S.A. advocates to the needs of
individuals with Rett syndrome and their families provincially and
nationally.

19. WHAT DOES O.R.S.A DO?
 The Ontario Rett Syndrome Association (O.R.S.A.) exists to
ensure that children and adults with Rett Syndrome are enabled
to achieve their full potential and enjoy the highest quality of life
within their community.

20. HOW DOES O.R.S.A HELP?
 Provide all new parents/guardians membership with a complimentary
parent package that includes the Silent Angel DVD and Rett
Syndrome Handbook
 Host conferences and medical symposiums
 Operate a Resource Centre
 Provide an information-based web site and newsletter
 Fund and support the Children’s Hospital of Eastern Ontario’s and
Thames Valley Children’s Centre’s Rett Syndrome Clinics
 Host regional activities to provide caring support and networking
opportunities
 Assist with connecting families to the Rett Syndrome Clinics, the
Canadian Rett Syndrome Registry, regional representatives, other
families and supports
 Provide funding for research

21. CONTACT INFORMATION
 Ontario Rett Syndrome Association P.O. Box 50030 London,
ON N6A 6H8
 Telephone: (519) 474-6877

22. WHO IS HOLLAND BLOORVIEW KIDS
REHABILITATION HOSPITAL?
 http://www.hollandbloorview.ca/
 Holland Bloorview Kids Rehabilitation Hospital (formerly Bloorview Kids Rehab) is Canada’s
largest children’s rehabilitation hospital.
 Our vision is to create a world of possibility for kids with disability.
 We pioneer treatments, technologies, therapies and real-world programs that give children
with disabilities the tools to participate fully in life.
 Holland Bloorview serves about 7,000 children each year, with about 600 inpatient admissions
and 58,000 outpatient visits. Holland Bloorview is a world-class teaching hospital fully affiliated
with the University of Toronto. We train future health-care specialists in the field of childhood
disability. The Bloorview Research Institute is located onsite, allowing us to integrate cutting-
edge research and teaching with frontline care to improve children’s quality of life.
 Our state-of-the-art building has been recognized by the International Academy for Design and
Health as ―an inspirational building…which speaks to a child’s right to participate in our
society.‖
 We see children with cerebral palsy, acquired brain injury, muscular dystrophy, amputation,
epilepsy, spina bifida, arthritis, cleft-lip and palate, autism and other developmental disabilities.
A small number of our clients have complex chronic diseases that require round-the-clock
medical care.

23. OUTPATIENT REFERRAL

24. CONTACT INFORMATION
 Holland Bloorview Kids Rehabilitation Hospital
150 Kilgour Road
Toronto, Ontario, Canada
M4G 1R8
 Tel: 416-425-6220
Toll Free: 1-800-363-2440
 Fax:
 General Information: 416-425-6591
 Confidential Client/Patient Information: 416-425-5709
 Confidential Employee Information: 416-424-3868
 Financial Information: 416-422-7039

25. WHO IS CENTENNIAL INFANT AND
CHILD CARE?
 http://cicc.ca/
 Centennial Infant and Child Centre is committed to the development and
education of young children with developmental challenges. Centennial
focuses on the individual needs of each child and family through early
intervention at home, in our integrated preschool and kindergarten programs,
and through participation in community programs. Centennial values and
builds on the unique abilities and strengths of children with special needs,
and encourages all of them to develop the confidence and skills to find their
place in the world.
 A Day at the Centre
 We help children with special needs begin to learn strategies which will help them to
develop and function as independently as possible in society. Staff and families set goals
through which these strategies will be achieved. All aspects of a child’s development are
considered. We believe the goals are best accomplished through an individualized
program. In our preschool this is enhanced with a one-to-one adult/child ratio and with the
inclusion of normally developing children. We work directly with families to lend emotional
support and to encourage the optimal development of each child. This is an on-going
process in which the staff and the family learn from each other.

26. SERVICES
 We help children with special needs begin to learn strategies
which will help them to develop and function as independently as
possible in society. Staff and families set goals through which
these strategies will be achieved. All aspects of a child’s
development are considered. We believe the goals are best
accomplished through an individualized program. In our preschool
this is enhanced with a one-to-one adult/child ratio and with the
inclusion of normally developing children. We work directly with
families to lend emotional support and to encourage the optimal
development of each child. This is an on-going process in which
the staff and the family learn from each other.

27. COST
 Tuition Fees
 Preschool Morning Program: Current fee – $550.00 per month, for the 2012-
2013 school year
Preschool Morning Program: $575 per month, for the 2013-2014 school year
Preschool Afternoon Program: $475 per month, for the 2013-2014 school year
 Subsidies are available through Toronto Children’s Services

28. CONTACT INFORMATION
 Centennial Infant and Child  Centennial Infant and Child
Centre
Centre Foundation
 1580 Yonge Street
Toronto, Ontario  1580 Yonge Street, Suite 300
M4T 1Z8 Toronto, Ontario
 Tel: 416 935-0200 M4T 1Z8
Fax: 416 935-0300
 Tel: 416 935-1200
 Executive Director: Barbara
Hannah Fax: 416 935-0300
Manager of Centre Helen Smith:
Operations: Kim Clarke: 416 hsmith@cicc.on.ca
935-0200 ext. 231
Office Manager : Pam ext: 233
McNamara: 416 935-0200 ext. Jessica Field:
230 jfield@cicc.on.ca
ext: 241

29. AISLING DISCOVERIES CHILD AND
FAMILY CENTRE
 http://www.aislingdiscoveries.on.ca/
 Aisling Discoveries Child and Family Centre provides service to
children from birth to twelve who are experiencing or are at risk of
developing social, emotional or behavioural problems.
 The Centre is committed to promoting and strengthening the
emotional and social well-being of children and their families,
through a variety of prevention, intervention and treatment
services. Families are an important part of the treatment and
decision making process. We strive to make services accessible
and culturally sensitive.

30. WHO ARE WE?
 Aisling Discoveries Child and Family Centre provides responsive
services in partnership with families and communities to
strengthen the social and emotional well-being of children and
promote their healthy development.
 We are accredited by Children’s Mental Health Ontario. Our
services are for children from birth to twelve years of age who
have social, emotional or behavioural problems and their families.
 We are located in east Toronto and services are predominately
provided in the communities of East York and Scarborough.

31. CONTACT INFORMATION
 325 Milner Avenue, Suite 110
Scarborough, ON
Canada, M1B 5N1
 Telephone: 416-321-5464
Fax: 416-321-1510
Email: mailus@aislingdiscoveries.on.ca
 Office Hours:
Mon-Thurs. 9:00am-7:30pm
Fri. 9:00am-4:00pm
 Executive Director: bkashima@aislingdiscoveries.on.ca
 For information about our services, contact our Intake staff at 416-
321-5464, ext. 233.

32. ADVENTURE PLACE CHILD AND
FAMILY CENTRE
 http://www.adventureplace.ca/
 Adventure Place has been assisting young children and their families since
1972. Our services are open to all families living in Toronto, North Quadrant,
with children up to 12 years of age who are experiencing difficulties in one or
more of the following areas:
 Development
 Learning
 Communication (Speech and Language)
 Behaviour
 Social and/or Emotional Functioning
 Attention and/or Regulatory Functioning
 Pervasive Developmental Disorders (ASD/PDD)
 Adventure Place is a registered charitable organization, fully accredited by
Children’s Mental Health Ontario.

33. MORE INFORMATION
 Our Mission
 To provide comprehensive mental health, social, and developmental services
dedicated to the well-being and success of children in their early years and to their
families.
 Our Philosophy
 At Adventure Place, we believe that all children have the right to healthy
development and to achieve their full potential.
 Our Goals
 To reduce the impact of difficulties and special needs.
To help children achieve their potential by building on their strengths and self-
esteem.
To increase parental knowledge, competence, and confidence.
To reduce family stress.
To reduce the risk of longer term or more complex difficulties.

34. CONTACT INFORMATION
 Adventure Place
McNicoll Public School
155 McNicoll Avenue
Toronto, Ontario M2H 2C1
 Telephone: 416 744 7650
Fax: 416 744 8055
 Main Office Hours of Operation
Monday - Friday 8:30 am to 4:30 pm
 How to Access our Service
Parent/legal guardian calls 416 744 7650 x.228

35.  http://connectability.ca/
 Welcome to ConnectABILITY a website and virtual community
dedicated to lifelong learning and support for people who have an
intellectual disability, their families and support networks. The core
of our community is accessible, self-directed access to valuable
information and tools, ready on demand.

36. GETTING TO KNOW CHILDREN'S
REHAB...
 Children’s Rehabilitation Centre – Algoma is one of twenty-one Children’s
Treatment Centres across Ontario which provides programs and services to
children and young people aged 0-18 years with long-term disabilities. Centre
staff focus on helping children and youth reach their potential and
independence in the areas of physical, perceptual, communication and/or
developmental challenges.
 The Centre is an incorporated, non-profit charitable organization with
accountabilities to a Board of Directors, the Ministry of Children and Youth
Services and the Sault Ste. Marie and Algoma District Social Services
Administration Boards.
 We are dedicated to supporting children and youth with special needs in the
development of their potential and participation as valued members of the
community.
 Family-centered care is at the heart of Children’s Rehabilitation Centre where
children from the District of Algoma receive support from a wide range of
health care and other professionals.

37. CONTACT INFORMATION
 CHILDREN’S REHABILITATION CENTRE ALGOMA
 SAULT STE. MARIE - HEAD OFFICE
74 Johnson Avenue Sault Ste. Marie, ON P6C 2V5
Tel: 705.759.1131 Toll Free: 1.855.759.1131
Fax: 705.759.0783 Toll Free Fax: 1.855.759.0783
 OUR DISTRIC OFFICES ARE LOCATED AT:
99 Spine Rd., Suite 301 Elliot Lake, ON P5A 3S9
26 Sainte Marie St. Wawa, ON P0S 1K0

38.  What is findasocialworker.ca?
 findasocialworker.ca is an online directory of social workers in
private practice in Canada. findasocialworker.ca is a project of the
Ontario Association of Social Workers (OASW), and each social
worker listed here is a member of their provincial social work
association and regulatory body. This directory is provided as a
free service to individuals or organizations wishing to locate and
engage the services of a social worker, and all social workers
listed have paid a fee to appear on this site.

39. RESOURCES
 Child care picture from Clip Art (Microsoft PowerPoint)  http://www.rett.ca/index.php/about/who-is-o-r-s-a/
 Child picture from Clip Art (Microsoft PowerPoint)  https://www.facebook.com/OntarioRettSyndromeAssociation
 Children picture from Clip Art (Microsoft PowerPoint)  http://www.rett.ca/index.php/about/our-mission/
 ECEP 233 Weeks 1-9 Class Notes  http://www.rett.ca/index.php/about/our-services-how-we-help/
 ECEP 233—Meeting the Needs of Children with Special Needs  http://www.rett.ca/index.php/contact-us/
Assignment Case Studies (2013)
 http://www.hollandbloorview.ca/about/index.php
 Family picture from Clip Art (Microsoft PowerPoint)
 http://www.hollandbloorview.ca/pages/documents/outpatient_referralform
 Hope picture from Clip Art (Microsoft PowerPoint) .pdf
 Information picture from Clip Art (Microsoft Power Point)  http://www.hollandbloorview.ca/pages/contactus.php
 List picture from Clip Art (Microsoft PowerPoint)  http://cicc.ca/about-us
 Modification picture from Clip Art (Microsoft PowerPoint)  http://cicc.ca/services
 Needs picture from Clip Art (Microsoft Power Point)  http://cicc.ca/preschool-program
 Resource pictures from Clip Art (Microsoft PowerPoint)  http://cicc.ca/contact
 Teaching picture from Clip Art (Microsoft PowerPoint)  http://www.aislingdiscoveries.on.ca/what_we_do/intro
 http://www.youtube.com/watch?v=d2Rv8JLH85I  http://www.aislingdiscoveries.on.ca/who_we_are/intro
 http://connectability.ca/2011/10/06/rett-syndrome/  http://www.aislingdiscoveries.on.ca/contact_us
 http://www.rettsyndrome.org/understanding-rett-syndrome/about-rett-  http://www.adventureplace.ca/about-us
syndrome/what-is-rett-syndrome
 http://www.adventureplace.ca/about-us#accessibility
 http://connectability.ca/2011/10/06/rett-syndrome/
 http://www.adventureplace.ca/contact
 http://www.mayoclinic.com/health/rett-
syndrome/DS00716/DSECTION=symptoms  http://connectability.ca/whats-inside/
 http://www.nomoretantrums.com/wp-content/uploads/2011/02/rett-  http://www.crcalgoma.ca/index.cfm?fuseaction=content&PageID=1099&
syndrome-228x300.jpg PageCategory=2
 http://www.crcalgoma.ca/index.cfm?fuseaction=content&PageID=1008&
PageCategory=6
 http://www.findasocialworker.ca/ON/en/About/AboutUs.asp