1. By: Pamela Kaushal
Teacher: Lisa McCaie
Section: 061
Course: ECEP 233
Student #: 300644117

2. Naveah has been diagnosed with Fragile X Syndrome.

3.  The parents of Naveah have a language barrier so they do not know what special
needs their daughter has.
 See if any caregivers can translate.
 We need to find resources in Spanish to help the parents understand. They can also
go on online discussions to see if someone who can speak Spanish can explain the
condition.
 Some websites pages online can actually be translated in Spanish.
 Extra time and considerations for translations
http://www.bermudahospitals.bm/health-wellness/conditions-A-Z.asp?chunkiid=254010
The link above explains the Fragile X syndrome in Spanish.

4. http://www.youtube.com/watch?v=t-
xGOVuvX8A

5. ―Fragile X syndrome is the most common genetically-inherited form of mental
retardation known‖.
―Children with Fragile X often appear normal in infancy but develop typical
physical characteristics later on‖.

6.  ― Naveah ‗s daily living skills are all of the areas of development that are
integral to our everyday routines‖.
 ―Eating, sleeping, dressing, washing and bathing, taking care of hygiene and
toileting are all daily living skills that may provide challenges for children with
Fragile X syndrome and their families‖. (Understanding Fragile X Syndrome, p.
72)

7.  Children with Fragile X may have autism.
 They may have vision problems.
 Fragile X syndrome is caused by a defect on the X chromosome.
 There is no cure for fragile X syndrome.
 There are different medications and therapies available.

8.  Children with Fragile X often have behavioural challenges. Parents and
teachers/educators need to help children cope with everyday life, like
school, home and the community.
 Using calming techniques can reduce anxiety and improve Naveah‘s
concentration.

9.  Children with Fragile X syndrome have trouble adapting to environments that
are distracting.
 The classrooms should not be too noisy.
 The class size should not be too big.
 Too many children can be a issue.
 Natural lighting, when possible is best, avoid fluorescent lights.
 Try to make routines and schedules predictable.

10. Children with fragile X may have specific learning disabilities that may require medication and
therapy.
Different types of therapies can help Naveah with her speech, her balance and behaviour.
There are many therapists that can speak Spanish, so they can support the family's needs as
well.
Speech language therapists: They can help children improve their pronunciation, help them
complete their sentences, help to develop language and help them problem solve.
 Use non verbal ways to teach them with picture cards.
 Physical therapists: Can help improve balance ad postures and build muscles.
 Behavioural therapists
 Teaches children to adjust in the environment

11.  Dr. Janice Tomlinson. ―She is a psychologist and a former Superintendent of
Special Education Services for the Hamilton Wentworth school board. She is in
private practice in Hamilton but does come to Toronto to do assessments if
she/you can locate a space in which she can see the child. With her unique
background in psychology and special education, she can make good
recommendations about educational and remedial programming for children‖.
 Dr. Virginia Frisk. ―She is a psychologist who was with SickKids for many years
working on neonatal follow-up programs but is now with the Dufferin-Peel
Catholic District School Board. She has a good background and decades of
experience with psycho-educational assessment and students‘ academic
difficulties‖.
 Dr. Jennifer McTaggart. ―She is a psychologist working at Chedoke-McMaster
Hospital in Hamilton. She has had very good training and internship
experiences with children and adolescents‖.
 Dr. Michaela Evans. ―She is very well trained clinically and can undertake both a
psycho-educational assessment and a clinical assessment that addresses
anxiety, emotional, and behavioural issues‖.
 ―You will be able to acquire phone numbers for these people from the College of
Psychologists of Ontario‖:
 https://members.cpo.on.ca/members_search/new

12. In the environment, we can use adaptations, such as physical
space, toys, visuals, materials. It is important for children with Fragile X to have
a certain amount of space, not too big.
They need visuals to help with language.
They also need special toys and materials to help their special needs.

13. It is important for children with Fragile X syndrome to have a quiet space.

14. ―Physical Space/ Removal of Barriers‖
 ―Appropriate Flooring‖
 ―Traffic Flow‖
 ―Washroom Accessibility‖
 ―Consistent Layout‖
 Adaptive Learning Environments notes
 http://www.edilportale.com/immagini/prodotti-thumb/b_prodotti-18649-rel4e40638e-9809-433e-921f-
83c3aabfff51.jpg

15. ―Flexibility in Routines, Schedules & Activities‖
 ―Giving children more time during transitions‖
 ―Different options for different abilities‖
 ―Adaptable materials-routines‖
 ―Follow up on expectations‖
 Adaptive Learning Environments notes
 http://t1.gstatic.com/images?q=tbn:ANd9GcRWVQGYNGBMuF_P2DjG2CLd3TgfrUN4081O0eqsBTBhSWp1p021

16. ―Labelling System‖
 ―Providing Pictures‖
 ―Large Bold Letters‖
 ―Bright Coloured Fonts‖
https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSOYDIqSa3F6VsUUTmTTIia6Wly4KOkVMdyUq5Caswq2J30MwlrJQ
Adaptive Learning Environments notes

17. ―Prompting and fading- Physical‖
 ―Hand over Hand‖
 ―Touching elbow to guide child to the block‖
―Visual Communication‖
 ―Classroom labels‖
 ―Labels‖
―Making choices‖
 ―Reduce frustration‖
 ―Promote self-esteem‖
(Reading Package, Task Analysis, p. 1 of 2)
http://t2.gstatic.com/images?q=tbn:ANd9GcQ9mOtEXc6qm3RmYmIrMIR6GqYK_76
AHaARArVxkCcsjlulAVto

18. “Task Analysis”
 “Organizing the steps”
 “Sequencing the steps”
 “Mastering the steps”
 “Gaining motivation to master the steps”
 “Generalizing the new skill to new people, places, and
conditions”
 (Reading Package, Task Analysis, p. 1 of 2)
 http://1.bp.blogspot.com/-LFiZaEZdwXM/Th4cR74fPwI/AAAAAAAAABs/aNWP1g09KwM/s1600/schkidule1.jpg

19. “Identifying skills to teach”
 “Problem solving”
 “Independence”
“Reinforcement- Connectability”
 “Use motivation”
 “Use praise”
“Giving instructions”
 “Use child’s name to get his attention”
 “Get down to his eye level”

20. ―Communication Skills‖:
 Children with the Fragile X syndrome have trouble with eye
contact. So it is important to ―look at the child‘s face when
you are speaking to them‖.
 ―Speaking slowly and clearly‖
 ―Giving child time to respond to you‖
(Reading Package, Everyday opportunities to develop communication skills, p. 1of 7)
http://t1.gstatic.com/images?q=tbn:ANd9GcRrfprmT3NPiiWPpfgon90-YFHzrc6kgtBUVamsnOma4o0LdFVt

21.  We need to include all children in child care centres, in all activities.
 Make the children have an understanding about Fragile X syndrome, and have
them learn that all children have different needs.
 Creating an inclusive environment.
 We are all different.

22. Parents need support by coping with the feelings that come when your child is
diagnosed with a special need. When Naveah‘s parents realize what their child‘s
special need is they will face different kinds of emotions.
Some of these emotions can be: anger, fear, guilt, sadness, denial, shock,
grief, and anxiety.
These reactions are normal and there are many resources for these parents.

23.  ―Tips on caring for the caregiver‖
 ―Caring for a child with fragile X syndrome can feel very stressful at times. It‘s
important to remember that fragile X does not define your life or your family‘s
life‖. Consider coping strategies such as:
 ―Taking care of other relationships: While you may feel like all your energy is
focused on your child with fragile X, be sure to take care of your other family
relationships‖.
 ―Communicate with each other but remember that people deal with emotions
differently. Allow each other some leeway in how you communicate. Make sure
your child‘s siblings understand his condition, and reassure them with your
attention‖.

24. ―Maintaining a sense of normalcy: Although your regular
routine may become centered around your child with fragile X,
try to keep your life as normal as possible. Continue doing
activities that were important to you. Maintaining some sense
of normalcy will help your family be in the best mindset to help
your child‖.
―Keeping a journal: Keeping a journal of your child's health and
medical care can be helpful for both you and your child's
medical team, especially if you ever need to change specialists.
You can also record your emotions and look back to reflect on
how you have managed each phase of the situation‖.

25.  “Researching and learning: Learn everything you can
about your child's condition and the treatments available.
Read inspirational stories about parents and children who
have been through similar situations‖.

26. Social/Emotional Development
Physical Development
Intellectual Development
Language Development
Cognitive Development
―Fine motors and gross motors
Delayed speech, repetitive speech.
Anxiety , shyness, attention deficit hyperactivity disorder (ADHD), autistic-like behaviour
sensitivity to touch or dislike of loud noises, difficulty making eye contact,
and aggression‖.
―Medical concerns : heart murmurs, vision problems, ear infections, reflux and
seizures‖.
―Their physical characteristics are long and narrow face, prominent ears, poor muscle
tone – which can cause crossed eyes or a squint, curve in the spine or slack face
muscles, flat feet, and loose joints (double joints)‖.

27. Parent to parent: Talk to parents in your situation.
Support groups: Support groups can help families get advice.
Faith-based support: Someone/ group that will listen to you, and have the same
beliefs as the families.
They can pray with the families during your treatment experience.

28. 
Social workers and mental health clinicians can help
families in Naveah‘s situation.
 They can offer counselling and assistance with issues such
as coping with your Naveah‘s diagnosis, translation for
diagnosis and financial problems.

29. Our Mission:
―The Leslie Dan Faculty of Pharmacy is committed to internationally significant innovation in the discovery and mobilization of pharmaceutical
knowledge in the pursuit of health‖.
http://www.pharmacy.utoronto.ca/about-us/our-mission-vision
They do research on animals to understand the effects of the Fragile X syndrome.
Contact David Hampson:
Our labs and offices are located on the 9th Floor
Leslie Dan Faculty of Pharmacy, University of Toronto
144 College Street
Toronto, Ontario Canada M5S 3M2
Tel: (416) 978-4494
Fax: (416) 978-8511
E-mail: d.hampson@utoronto.ca


30. Mission and Vision
“United Families of Eastern Ontario is a coalition of family groups and individuals joining together to
improve the lives of children and adults with developmental disabilities in Eastern Ontario by ensuring that
we have access to the same opportunities and choices as other Ontarians‖.
“Advocating with government and other agencies on issues affecting families and individuals‖.
“Sharing information between families, individuals with developmental disabilities and groups on
events, meetings, government legislation, supports and services ...‖.
“Raising awareness within the general public on issues of concern‖
“Increasing UFEO's membership in order to have a strong UNIFIED FAMILY VOICE in Eastern
Ontario”
Vision
“Citizens with developmental disabilities have access to the same opportunities and choices
as other Ontarians”.
―United Families of Eastern Ontario strives to have representation from all family-focused groups in
Eastern Ontario, whose family members have a developmental disability‖.
No waiting list, no cost, have to be a Canadian citizen and live in Ottawa our surroundings. Need to
submit supporting documents to define developmental disability.
1-855-376-3737

31.  The Fragile X Research Foundation of Canada Headquarters
Our mission
―The Fragile X Research Foundation of Canada (FXRFC) is a non-profit, tax-exempt charity run by parents and volunteer professionals
that is dedicated to raising awareness of Fragile X syndrome, funding biomedical research for improved treatment and
ultimately, finding a cure for this disorder‖.
―Understanding both the suffering that Fragile X syndrome can cause and, more importantly, the many reasons for optimism and hope
through advances in research, they founded the Fragile X Research Foundation of Canada (FXRFC)‖.
167 Queen Street West
Brampton, Ontario
Canada L6Y 1M5
Phone: 905-453-9366
info@fragilexcanada.ca

32. Surrey Place Centre
Mission:
―Surrey Place Centre provides specialized clinical services that are responsive to individual need and
promote health and well-being. In addition to our direct service role, we facilitate system-wide
access to information and supports. Our leadership in research, evaluation and education is directed
toward advancing knowledge and practice in the field and building the capacity of service systems.
As an organization we are committed to supporting the social inclusion of people with developmental
disabilities and/or autism spectrum disorders‖.
―You must call us to be assessed for a developmental disability. If you have been previously
diagnosed with a developmental disability, a call will be required to gain access to our specialized
groups and services‖.
Although this centre does not focus on Fragile X syndrome, they still can help Naveah with
developmental issues such as cognitive and autism in case Naveah may have autism as well.
Please call (416) 925-5141 during our office hours:
Monday, Friday: 8:30 am to 5:00 pm
Tuesday, Wednesday, Thursday: 8:30 am to 8:30 pm

33. Aisling Discoveries Child and Family Centre
120 Middlefield Road
Scarborough, ON,
Canada M1S 5E2
Tel: (416) 321-1445
 ―Aisling Discoveries Child and Family Centre relies on the support of our community
to fulfill our mission‖.
 ―We encourage you to get involved by becoming a member; providing financial
support through a charitable donation; considering employment at our Centre; or
seeking opportunities for volunteer work or a student field placement‖.
 ―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‖.
 The cost is free, it is by referral only.
 They are not Fragile X syndrome focused but can help with autism and
social/emotional and behaviours problems.
 http://www.aislingdiscoveries.on.ca/files/images/homepg400px175p.jpg

34.  Children with Fragile X, may have anxiety issues.
 Mission: ―To catalyze interdisciplinary interactions among clinicians, scientists
and the public that will improve the health and well-being of children through
the development and applications of genetic knowledge and technology‖.
 ―Here at SickKids, there is an Anxiety Clinic which provides assessments for
anxiety disorders. The children must be between the ages of 6-13 for first
visits. A referral form from a physician or paediatrician must be faxed in to
begin the process‖.
 The fax number is 416-813-7361. Parents should contact the Intake Coordinator
(Kristina Klopfer—416-813-8636, kristina.klopfer@sickkids.ca) for further
information.

35.  Community Association for Riding for the Disabled (CARD)
 www.card.ca
Toronto ON 416-667-8600
This is a therapeutic horseback riding program for children and adults with disabilities. Its goals are to
improve balance, coordination, confidence, self esteem and social skills.

36. Gymboree Learning Program
Gymboree Learning Program
―This program offers a progression of developmentally appropriate play, music and arts classes for infants and young
children and their parents‖.
―The website has interesting links‖.

37.  Harbourfront Centre
 www.harbourfrontcentre.com
Toronto ON 416-973-4600
―A wide range of programs are offered throughout the year for children‖.
 Laura Hunters STEPS Programs
 www.stepsprograms.com
Stouffville ON 905-642-8001
 ―STEPS stands for Specialized Therapeutic Education for Physical Skills. Laura runs gym, biking, horseback riding and life
skills programs year-round, for toddlers to young adults with intellectual and/or physical disabilities‖.
 .

38.  Martial Arts
 Martial arts may be helpful to children with learning or developmental
disabilities.
 They can improve self-esteem and by joining competitions.
 Find one closest to you.

39.  Ontario Track 3 Ski Association
 www.track3.org

Ontario 416-233-3872, Toll Free 1-877-308-7225
This organization teaches downhill skiing and snowboarding to children and youth with all kinds of disabilities.
Special Olympics Canada
 www.specialolympics.ca
Toll Free 1-888-888-0608
―Programs offered nationally
This is a community-based organization across Canada that provides sport training and competition opportunities
for children and adults with an intellectual disability‖.

40.  The YMCA
The YMCA
―Ys have many activities and camps that include kids with special
needs, look for the one closest to you‖.

41.  Images:
http://t2.gstatic.com/images?q=tbn:ANd9GcT2nF6sgiV3HEVnBX9VA1NZDgSNolrY39a6GvcuQrHXrdwG_F9S5w retrieve from google images.
Com 03/24/13
http://www.cdc.gov/ncbddd/childdevelopment/images/child-fingerpaints.jpg retrieved from google images. com 03/24/13
http://www.mandygregory.com/images/digital%20pics/classroom%20pics/second%20grade/after%20pictures/library.jpg retrieved from
google images. com 03/24/13
http://t2.gstatic.com/images?q=tbn:ANd9GcThpuosRZf5N2JgbEO9EPXuuUpjDckzvRPwsofdYrYxlmex6Z3n retrieved from google images.
Com 03/24/13
http://t0.gstatic.com/images?q=tbn:ANd9GcRur5Ty4PxXgNOkeJS0OjgOhYPJNiEOd2iyMi_UT7D61ewn4RlFVw retrieved from google images.
Com 03/24/13
https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcTRnLTlqomFcHTUzej3heuKpIDMdCfi8oDzKa6B2dF78E2Z2wqtmA retrieved from
google images. Com 03/24/13

42.  Images
http://t0.gstatic.com/images?q=tbn:ANd9GcQmCnLB-0rGoiacZBgzVvqAmKDOum3anLVTalmN5XksyaZeHqCL
Retrieved from google images 03/24/13
https://encrypted-tbn2.gstatic.com/images?q=tbn:ANd9GcRfs3Nlpj-
EIefkpCM9XZuDTtXrJ4xRnha6NXfRLjqBMyqBeZq5Retrieved from google images 03/24/13
http://play2podium.com/parenting/professionals/toy-guideRetrieved from google images 03/24/13
http://t0.gstatic.com/images?q=tbn:ANd9GcSSSbhaQa4SFXSPmv5aI7_gFmwWYH2EGpHohqE_0lIVeRoBAUJtMARetrie
ved from google images 03/24/13
https://encrypted-tbn3.gstatic.com/images?q=tbn:ANd9GcQaRO3-
KRQuV0KaXlCCfpLTnf6eCOum73hXJgKPMA5KDNYJooVoGgRetrieved from google images 03/24/13
http://www.logisticsmatter.com/wp-content/uploads/2010/11/IMG02067-20101104-0837.jpg retrieved from google
images. Com 03/24/13
http://play2podium.com/wp-content/uploads/2011/11/special-need-toys-300x245.jpg retrieved from google images.
Com 03/24/13
http://t2.gstatic.com/images?q=tbn:ANd9GcQ9mOtEXc6qm3RmYmIrMIR6GqYK_76AHaARArVxkCcsjlulAVto
Retrieved from google images 03/24/13

43. Images
http://t2.gstatic.com/images?q=tbn:ANd9GcQ9mOtEXc6qm3RmYmIrMIR6GqYK_76AHaARArVxk
CcsjlulAVt Retrieved from google images 03/24/13
http://www.bls.gov/ooh/images/p12-to-p13/p131-1-jpg.jpg Retrieved from google images
03/24/13
http://www.support-for-add-and-autism-spectrum.com/images/pause4kids3.jpg Retrieved from
google images 03/24/13
Retrieved from google images.com 03/24/13
http://www.northwestmilitary.com/installations/military-life/2012/03/Panel-aims-to-boost-
support-to-special-needs-families/uploads/articles/17993-banner-15961-banner-family_-
_by_Robert_Crum.jpg
Retrieved from google images. Com 03/24/13
http://1.bp.blogspot.com/-
LFiZaEZdwXM/Th4cR74fPwI/AAAAAAAAABs/aNWP1g09KwM/s1600/schkidule1.jpg
Retrieved from google images. Com 03/24/13

44.  Images
http://www.childrenshospital.org/az/Site1788/mainpageS1788P4.htm Retrieved from google images 03/24/13
Retrieved from google images 03/24/13.
l http://www.northwestmilitary.com/installations/military-life/2012/03/Panel-aims-to-boost- support-to-special-needs-
families/uploads/articles/17993-banner-15961-banner-family_-_by_Robert_Crum.jpg Retrieved from google images 03/24/13
http://www.fragilexohio.org/images/366_littleguy.gif Retrieved from google images 03/24/13
https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSOYDIqSa3F6VsUUTmTTIia6Wly4KOkVMdyUq5Caswq2J30MwlrJQ
Retrieved from google images 03/24/13
http://www.edilportale.com/immagini/prodotti-thumb/b_prodotti-18649-rel4e40638e-9809-433e-921f-83c3aabfff51.jpg Retrieved from
google 03/23/13
http://www.surreyplace.on.ca/Pages/Home.aspx
Retrieved from google images 03/24/13
 Youtube video link
http://www.youtube.com/watch?v=t-xGOVuvX8A
Retrieved from youtube 03/24/13

45. http://www.pharmacy.utoronto.ca/about-us/our-mission-vision
http://www.nshss.org/images/newsletter/university-of-toronto-logo.jpg?sfvrsn=0 Retrieved from google 03/23/13
http://zync.ca/srv/thumb.php?src=%2Fvar%2Fwww%2Fvhosts%2Fzync.ca%2Fhttpdocs%2Fwp-
content%2Fuploads%2F2011%2F08%2Fport_fx_01.jpg&w=650&h=388&zc=1&cva=m&cha=c&q=80 Retrieved from google
03/23/13
http://www.itbusiness.ca/upload/IT/News/zThe_H477.gif Retrieved from google 03/23/13
http://www.sickkids.ca/PaediatricLaboratoryMedicine/Laboratories-Services/Molecular-Genetics-Laboratory/Test-Services-
Available/Fragile-X-Syndrome.html
http://careerservices.senecac.on.ca/media/web_ready_logos/CardLogo.gif Retrieved from google 03/23/13
www.card.ca
http://c10566323.r23.cf2.rackcdn.com/03-28-05_uplifting_original.jpg Retrieved from google 03/23/13
www.gymboreeclasses.com
http://www.fragile-x.ca/
http://www.torontowaterfrontmarathon.com/en/charity/fragilex.htm
http://fragilexcanada.ca/index.php?id=5,0,0,1,0,0
http://www.ufeo.ca/en/ufeo/Mission_and_Vision_p3031.htm l
http://www.surreyplace.on.ca/Pages/Home.aspx
http://www.aislingdiscoveries.on.ca/

46.  Recreational
http://www.harbourfrontcentre.com/images/footer/2013/camps-ad.jpg Retrieved from google 03/23/13
www.harbourfrontcentre.com
http://www.stepsprograms.com/images/logo_steps.png Retrieved from google 03/23/13
www.stepsprograms.com
www.track3.org
http://elipse.ca/melanie/images/Track3Logo2.jpg Retrieved from google 03/23/13
http://www.ldsa.ca/wp-content/uploads/2011/08/soc_can_bil_col.jpg Retrieved from google 03/23/13
www.specialolympics.ca
http://home2.btconnect.com/ymcataunton/Quickstart/ImageLib/YMCA_Website.jpg Retrieved from google 03/23/13
www.ymca.ca
 Spanish Link
http://www.bermudahospitals.bm/health-wellness/conditions-A-Z.asp?chunkiid=254010
 Book
Fernandez, I., (Understanding Fragile X Syndrome, p. 72) 2011, Jessica Kingsley Publishers,. London, UK
 Notes
Adaptive Learning Environments notes
Textbook
 Reading Package, Inclusion of Children with Special Needs, 2011