Meeting the Need of

Children and Families

Assignment
By: Kuochi Yao
Professor: Lisa McCaie
ECE223 Section 062
April 1st .2014

http://www.genengnews.com/media/images/GENHighlight/July29_11
368531_Chromosomes_QuestDxFragileXTestNYState_Edit22220717
51.jpg

Case Study - Nevaeh

Nevaeh was recently

diagnosed with Fragile X

Syndrome
Her parents English is very

limited (native language

being Spanish), so they did
not understand the diagnosis
As early childhood educators,

what can we do for Neveah

and her parents?
http://www.abc.net.au/reslib/201003/r
529170_2995390.jpg

Needs of the Family

Nevaehs parents will need to first

understand the doctors diagnosis

Since English is not their native
language, the diagnosis must be
translated for them
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.
The following website can be of great
help:
Centers for Disease Control and
Prevention, mirrored in full Spanish
http://www.cdc.gov/spanish/ http://2.bp.blogspot.com/VLEW1J3WR1Y/UOdII9nkpSI/AAAAAAAAE6w/2ndFOnQyJhc/s16
00/Rachael4.JPG

What is Fragile X Syndrom?

Fragile X Syndrome (FXS) is the most common

genetic syndrome which causes intellectual and

learning disabilities
It is also the most widespread single-gene
cause of autism
http://www.fraxa.org/fragilex/

This causes struggles with developmental

delays in cognitive and language, behavioral

problems, repetitive speech and autistic - like
behaviors. (week 3 notes)

What is Fragile X Syndrom? (cont)

FXS is caused by a faulty gene in the X

chromosome passed from their mother (week 3

notes). A specific gene, called the FMR1, makes
necessary protein for the brain to fully develop. If
this gene is faulty or altered, then there becomes a
deficiency in the protein necessary for brain
development.
http://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspx

http://syndromepictures.com/wpcontent/uploads/2011/09/Fragile-x-syndromepictures.jpg

What is Fragile X Syndrom? (cont)

Affects approx 1 in 4000 boys and 1 in 6000 girls
Can effect both sexes, but Boys are affect more

severely. (week 3 notes)

Boys only have 1 X Chromosome where girls have 2

http://www.fraxa.org/fragilex/
[1]
Fragile X Syndrome: Diagnosis, Treatment, and
Research, Randi Jenssen Hagerman, Paul J.
Hagerman,
[1]
http://www.care.com/special-needs-caring-for-achild-with-fragile-x-p1167-q227932.html

http://www.ridingthestork.com/wpcontent/uploads/2013/01/FragileX.jpg

What causes Fragile X?

Fragile X Syndrome is a genetic

syndrome which is caused by a

faulty gene in the X chromosome,
and is completely inherited from
the parents.
In human genetics, males carry
one of each X and Y chromosomes,
while females carry a pair of X
chromosomes. In the case of
Fragile X, a specific gene, called
the FMR1, makes necessary protein
for the brain to fully develop. If
this gene is faulty or altered, then
there becomes a deficiency in the
protein necessary for brain
development.

http://www.news-medical.net/health/What-is-Fragile-X-Syndrome.
aspx

Symptoms of Fragile X Syndrome

Children with the syndrome

often appear normal during

infancy, but develop typical
physical characteristics later
on. These physical
characteristics may include:
Long face
Large, protruding ears
Hyper extensible joints,
especially fingers
Low muscle tone
Males may develop large
testes after puberty
http://www.news-medical.net/health/What-isFragile-X-Syndrome.aspx

Symptoms of Fragile X Syndrome

Aside from the physical features, there are also some common symptoms that can

be observed from children affected by the FXS, but not limited to:
Mild to Severe intellectual disabilities
Short attention span and hyperactivity
Social anxiety
Impulsiveness and mood swings
Speech barrier and delays
Hand flapping
Boys are typically affected by the syndrome more severely than girls. Only about

a third to half of the girls with FXS suffers intellectual disabilities, while almost all
of the boys who are diagnosed do.

http://www.intellec
tualdisability.info/d
iagnosis/images1/diagnosis/sabara
tnam4.gif
http://www.news-medical.net/health/What-is-Fragile-X-Sy
ndrome.aspx

significant breakthroughs in
understanding Fragile X
FRAXA-funded research has achieved significant

breakthroughs in understanding Fragile X. We

now know that the FMR proteins normal role is to
help shape the connections between neurons
(brain cells) that underlie learning and memory,
and we are beginning to understand how the lack
of the protein causes Fragile X syndrome.
Because absence of the FMR protein delays the
development of neurons, rather than damaging
or destroying them, it is likely that treatments
now being investigated will benefit all individuals
with Fragile X, regardless of age.
http://www.fraxa.org/fragilex/treatment/

Is there a cure?
Unfortunately there are no

known cures for the

syndrome.
With advancement in
research and awareness, FXS
can often be detected in the
early stages of childhood.
Through proper medication,
preparation and education, a
childs potential can be fully
maximized.
http://www.fraxa.org/fragilex/treatment/

https://sfari.org/ima
ges/inbrief/FragileXsistersa
rticle.jpg/image_me
dium

Medical Concerns due to FXS

Vision problems
Unable to focus eyesight on an object
Approximately 10% may suffer seizures
Ear Infections
High blood pressure during adulthood
http://www.fraxa.org/fragilex/treatment/

http://childdevelopment
info.com/wpcontent/uploads/2013/1
1/add-adhdadhdmedications-childrenmedication-list-sideeffects-research.jpg

Treatment of FXS
There are currently no cure for the condition
Treatments are available
Occupational Therapy
Speech Therapy. Speech can help a child improve their

communication and social skills.

Behavioral Therapy
Medication to suppress symptoms
Special Education
With medical advancement, Early detection and intervention
are now possible
Prescription medication can help with the childs hyperactivity,
short attention span and social anxiety issues. So even though
a cure is not readily available, children can still be assisted to
http://www.fraxa.org/fragilex/treatment/
cope with mainstream society.
http://www.chp.edu/cs/Satellite?blobcol=urldata&blobheader=image
%2Fjpeg&blobkey=id&blobtable=MungoBlobs&blobwhere=1294152140381&ssbinary=tr

Effects of Fragile X on Children

Most children with Fragile X

will experience a degree of

difficulty in learning. (week 2
notes)
learning disorders or
problems with mathematics,
to severe.
developmental disability.
(week 2 notes)
The syndrome will affect the
childs ability to think, reason,
and learn. (week 2 notes)
http://www.abc.net.au/radionational/i
mage/4277668-3x2-340x227.jpg

Effects of Fragile X on Children

often startled or anxious in new environments.
more accustom to familiar surroundings and have a

harder time adapting.

They have a hard time making eye contacts, are
often shy around people, and often have short
attention spans.
They are very sensitive to light and sound and some
are affected by vision problems.
difficulty with language, speech and communication.
suffer from delayed speech, repetitive speech, and
difficulty in language education.
http://www.news-medical.net/health/What-is-Fragile-X-Syndrome
.aspx

Effects of Fragile X on Children

will suffer physical

disabilities such as
underdeveloped fine
motor skills and gross
motor skills.
Most will adopt physical
characteristics such as
long face and large ears
as previously mentioned.
These signs will become
more obvious as the http://news.stanford.edu/news/2004/
child become older. march17/gifs/fragilex.jpg
http://www.news-medical.net/health/What-is-Fragile-X-Syndrome

Nevaehs Special Needs

Accommodate for shown symptoms due to her

condition
Adjust physical environment to accommodate

for her needs

Design teaching strategies that are most

suitable for her

Include her as part of classroom activities

Physical Environment
Provide her with enough physical space
Children with FXS are often very sensitive to

light and sound. Because of this, we should

remove florescent lights and use as much
natural lighting as possible, as well as reduce
the amount of noise level around her to avoid
causing her irritation.
Reduce noise level around her (adaptive
learning environment notes.)

http://st.houzz.com/simages/67736_0_8-1000contemporary-home-gym.jpg

Physical Environment (cont)

Use labeling system with LARGE BOLD

COLOURFUL fonts. (adaptive learning

environment notes.)
Place pictures and illustrations in the
environment. (adaptive learning environment
notes.)
http://usefulbeautifulho
me.com/wpcontent/uploads/2013/0
6/Toy-Storage-atUsefulBeautifulHome.co
m_.jpg

Physical Environment (cont)

Bean bags, small swings can often be used to

calm a child with FXS

Remove unnecessary barriers and allow free
traffic flow. (adaptive learning environment
notes.)

http://www.shopperheads.com/media/catalog/pr
oduct/cache/1/image/9df78eab33525d08d6e5fb
8d27136e95/k/i/kids_aqua-500x501_large.jpeg

Physical Environment (cont)

Aim to provide a comfortable and soothing

environment for Nevaeh; help minimize her

anxiety being introduced to new surroundings.
(adaptive learning environment notes.)
Try to avoid making drastic changes to the

surroundings once she has familiarized herself

with the environment.

Teaching Strategies
Every child affected with FXS

have different learning

capacities
Devise strategies that are most

suitable for her through

assessment
Concentrate on areas where

she experiences most

difficulties
Have PATIENCE

http://www.mentalhelp.net/i
mages/root/specialeducatio
n.jpg

Teaching Strategies (cont)

Create IPPs and IEPS for Nevaeh to follow,

allowing her to know what to expect.(week 4

notes)
Changes to pre-defined routines and schedules
must be communicated clearly through verbal and
visual cues
We should keep her schedule on a board or on a
card which she can access with ease; any changes
we make to it should be written or drawn out and
placed in sequence. This will make her
comfortable in her learning environment, and
increase her willingness to learn.

Teaching Strategies (cont)

Children with FXS are often sweet

and friendly, but sometimes they

can be impulsive, aggressive and
hyperactive.
devise a behavioral plan that can
help calm her when such
situation arises.
A concrete reward system will
also help the child understand
the correctness of her behavior.
If she does things that are correct
and needs encouragement, we
can reward her with stickers and
price. (week 7 notes.)

http://2.bp.blogspot.com/_OsQzts6MITc/
TJqw21ECEgI/AAAAAAAACwg/insY5CDW
Vos/s1600/DSCF8940.JPG

Teaching Strategies (cont)

When communicating with Nevaeh, keep at her eye level and

make sure you are speaking to her face.

Speak clearly and slowly to her face
Use her name when addressing her or trying to get her
attention.(week 7 notes)
Enlarging involves adding small piece or materials to make
toy accessible. (week 7 notes)

http://evidencebasedliving.human.
cornell.edu/files/2012/11/autism1.j
pg

Teaching Strategies (cont)

Keep tasks simple and instructions clear. .(week 8 notes)
Frequent use of visual cues .(week 8 notes)
Use hand over hand strategy or partial physical guidance such as

guiding of the elbows to initiate her into the task.(week 8 notes)

Prompt and fade as she becomes familiar with the activity so she can
develop problem solving skills and independence. (week 7 notes.)
Analyze task routines so she can apply what she has learned in other
situations (week 7 notes)

http://1.bp.blogspot.com/f0IXFq-6w8Q/T9i9Cr_xrI/AAAAAAAAUYo/WKjJx7Lx
77M/s640/Positive+Behav
ior.jpg

Teaching Strategies (cont) For

example.
teaching her how to user a pair of scissors to cut a piece of

paper.
Hold her hand in the beginning to teach her the correct method
step by step.
As she becomes more familiar with handling the scissors, hold
her paper or shoulder while shes doing the cutting.
When she is completely confident with her way around a
scissors, cue her in to cut a piece of paper, and watch her do it
all by herself.
Take a simple task, analyze it, organize it into steps that she can
follow, and guide her until she can master these steps. Then
teach her to transfer the skills she just learned into a new
scenario. This will improve her self-confidence, problem solving
and cognitive skills.

Teaching Strategies (cont)

Develop Nevaehs motor skills by guiding her

through different exercises

Playing with putties and clay will help her
develop her muscle tone
Finger tracing and drawing in air will improve
her hand-eye coordination
Tying shoes and writing will increase her fine
motor muscle coordination
Make sure these exercises become routine for
her; it will be greatly benefit her physical
development in the long run.

As Part of a Group
Keep class sizes small so she can become

familiar with individual classmates

Due to FXS childrens short attention span, they
should often be placed at the front of the class
near the teacher during the circle time. This
way they are less likely to divert their attention
elsewhere.
Make sure she feels she is in an inclusive
environment. (week 2 notes.)
http://3.bp.blogspot.com/_LqmtIoDKX
Rg/S9rxy7aLq7I/AAAAAAAAARY/1HN
xRc_vqsU/s1600/35320686.jpg

As Part of a Group(cont)
Neveah, as well as every other child, needs to

be included in all of the activities.

Built on the foundation pf respect, fairness,
justice and equity. (week 2 notes)We must
teach them that every child is different, and
their needs are all different, but it does not
mean that they are excluded from anything
that we have to offer.

Needs of the Family as a Whole

Nevaehs parents will experience a period of grief,

sadness, denial and sometimes anger; these are

normal reactions, and should be encouraged
(week 2 notes)
We must make ourselves available for emotional

support during the initial period. (week 2 notes)

Provide information and guidance for the parents

to cope with the situation.(week 2 notes.)

Needs of the Family as a Whole (con)

Direct Nevaehs parents to local agencies and

support groups that offer help for families in

their situation. (week 2 notes)
Connect them to other parents who are in

similar situations so they can share their

experiences. (week 2 notes)
Help them find therapis who can address

Nevaehs early symptoms. (week 2 notes)

Needs of the Family as a Whole (con)

Keep constant communication with the family

on an on-going basis. (week 2 notes)

Provide Nevaehs parents constant feedback of

her progress at school; use different

communication means if necessary such as
face to face, telephone, email or bulletin
boards. (week 2 notes)

Needs of the Family as a Whole (con)

Try to keep a sense of normalcy in their daily

routines, as difficult as it may be. Maintaining a

sense of normalcy will help the family to be in
the right mindset to help the child.
Nevaehs parents must become her best

advocate; they must research and learn about

the her condition and treatments as much as
they can.
http://www.care.com/special-needs-caring-for-a-child-with-fragile-x-p1167-q227932.h
tml

Needs of the Family as a Whole (con)

Be strong and supportive as a family, and know

that youre not alone

http://bellophoto.net/wp-content/uploads/2008/10/f0076_0138.jpg

Adventure Place Child and

Family Centre
McNicoll Public School
155 McNicoll Avenue
Toronto, Ontario M2H 2C1
Telephone:416 744 7650

Fax:416 744 8055

Main Office Hours of Operation
Monday - Friday8:30 am to 4:30 pm
Website:http://www.adventureplace.ca/

Agencies
Adventure Place Child and Family Centre
Adventure Place is a child and family centre that provides prevention, early

intervention, and treatment services to children and their families. We help

children realize their full potential, including those with special needs.
Adventure Place is an agency whose mission is to 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.
They have been assisting children, who are experiencing difficulties in learning,

development, communication and behavior since 1972. They provide services

for children up to the age of 12, as well as their families. It is fully accredited
by Childrens Mental Health Ontario, which assesses the agencys program,
staff, management and facility to ensure theyre of the highest quality.
http://www.adventureplace.ca/

Holland Bloorview Kids Rehabilitation Hospital

Holland Bloorview Kids Rehabilitation

Hospital
150 Kilgour Road
Toronto, Ontario, Canada
M4G 1R8
Tel: 416-425-6220
Toll Free: 1-800-363-2440
Website:http://www.hollandbloorview.ca/

Agencies (con)
Centennial Infant and Child Centre
Centennial Infant and Child Centre is an organization that not only provides

support and programs for children in need, but also concentrates on providing
support for the childrens family as well. Targeting children up to 4 years of age,
CICC offers a variety of programs supporting children with developmental
challenges. This includes but not limited to Down-syndrome and other
chromosome abnormalities; cerebral palsy and other motor delays; cognitive,
neurological, visual and auditory impairments.
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 program, 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.
http://www.cicc.ca

Centennial Infant and Child Centre

Centennial Infant and Child Centre
1580 Yonge Street

Toronto, Ontario
M4T 1Z8
Tel: 416 935-0200
Fax: 416 935-0300
Website:http://www.cicc.ca

Agencies (con)
Holland Bloorview Kids Rehabilitation Hospital
This Centre is one of Canadas leading facilities for treating children

with disabilities. Being the largest such facility in Ontario, they

specialize in family-centred rehabilitation and habilitation,
advocacy,educationand research.
Identified as one of the leaders in dealing with childhood disabilities,

Holland Bloor view assists young people from birth to 19-years old with
a wide range of services that include but not limited to: chronic care,
Neurorehabilitation Program, Neurodevelopmental Program,
Musculoskeletal Program, therapeutic recreation, community outreach,
art therapy, life skills, school health support and a summer camp
http://www.hollandbloorview.ca/

Aisling
Discoveries
Child and Family Centre

120 Middlefield
Road
Scarborough, ON,
Canada M1S 5E2
Tel: (416) 321-1445
Office Hours:

Mon-Thurs. 9:00am-7:00pm
Fri. 9:00am-4:00pm

Agencies (con)
Aisling Discoveries Child and Family Centre
An agency with services designed for children with development delays,

speech and language disorders, autism as well as other disabilities, it

also operates as a mental health centre
Intended for children up to the age of 12, this facility offers services not

only in English but many other languages as well (Spanish upon

availability). This would be greatly beneficial for Nevaehs family due to
their lack of English speaking skills
The facility also offers support for groups, individuals and family

counseling, as well as other consultation services that are tailored to

each child and familys needs
http://www.aislingdiscoveries.on.ca/

Fragile X Research Foundation

of Canada/Fragile X Clinic
Fragile X Research Foundation of

Canada/Fragile X Clinic
167 Queen Street West
Brampton, Ontario
Canada L6Y 1M5
Phone: 905-453-9366
Website: http://www.fragilexcanada.ca/

Agencies (con)
FXRFC also established and currently operating the first and only dedicated

Fragile X Clinic in Canada. Spearheaded by Dr. Carlo Parabola, the clinic is

currently assessing and treating patients of all ages across the country
The Fragile X Clinic, currently located in Brampton, ON, is one of the first

clinics in Canada to conduct clinical trials aimed at creating a cure for the
syndrome. For more information on clinics which conducts clinic trials on
Fragile X Syndrome,. http://www.fragilexcanada.ca/index.php?
id=113,0,0,1,0,0

FXRFC do not run treatment programs of its own. Instead, they are
dedicated to raise awareness of the syndrome as well as finding a cure.
Clinical trials can be booked directly with the Clinic, pending availability of
the Doctor
http://www.fragilexcanada.ca/

reference
Class notes
http://es.wikipedia.org/wiki/S%C3%ADndrome_X_fr%C3%A1gil
http://www.cdc.gov/spanish/
http://www.fraxa.org/fragilex/
Fragile X Syndrome: Diagnosis, Treatment, and Research, Randi Jenssen

Hagerman, Paul J. Hagerman,

http://www.care.com/special-needs-caring-for-a-child-with-fragile-xp1167-q227932.html
http://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspx http://syndromepictures.com/wpcontent/uploads/2011/09/Fragile-x-syndrome-pictures.jpg
http://www.care.com/special-needs-caring-for-a-child-with-fragile-xp1167-q227932.html
https://runklescience.wikispaces.com/file/view/autosomal_dominant.jpg/30631549/auto
somal_dominant.jpg

reference
http://www.fraxa.org/fragilex/treatment/
http://www.care.com/special-needs-caring-for-a-child-with-fragile-x-p1167q227932.html

:http://www.adventureplace.ca/
http://www.adventureplace.ca/
:http://www.hollandbloorview.ca/
http://www.familycare.utoronto.ca/parenting/snd.html
http://www.hollandbloorview.ca/about/accountability/strategicplan/visionmissio
nvalues.php

http://www.cicc.ca
http://www.cicc.ca/about/