Meeting the Need of Children and Families Assignment
Meeting the Need of Children and Families AssignmentBy: Kuochi
YaoProfessor: Lisa McCaieECE223 Section 062April 1st .2014
http://www.genengnews.com/media/images/GENHighlight/July29_11368531_Chromosomes_QuestDxFragileXTestNYState_Edit2222071751.jpgCase
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/r529170_2995390.jpgNeeds of
the FamilyNevaehs parents will need to first understand the doctors
diagnosisSince English is not their native language, the diagnosis
must be translated for themWe 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/s1600/Rachael4.JPGWhat
is Fragile X Syndrom?Fragile X Syndrome (FXS) is the most common
genetic syndrome which causes intellectual and learning
disabilitiesIt is also the most widespread single-gene cause of
autismhttp://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/wp-content/uploads/2011/09/Fragile-x-syndrome-pictures.jpgWhat
is Fragile X Syndrom? (cont)Affects approx 1 in 4000 boys and 1 in
6000 girlsCan effect both sexes, but Boys are affect more severely.
(week 3 notes)Boys only have 1 X Chromosome where girls have 2
http://www.ridingthestork.com/wp-content/uploads/2013/01/FragileX.jpghttp://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-a-child-with-fragile-x-p1167-q227932.html
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.aspxSymptoms
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 faceLarge, protruding
earsHyper extensible joints, especially fingersLow muscle toneMales
may develop large testes after puberty
http://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspxSymptoms
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 disabilitiesShort
attention span and hyperactivitySocial anxietyImpulsiveness and
mood swingsSpeech barrier and delaysHand flappingBoys 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.intellectualdisability.info/diagnosis/images-1/diagnosis/sabaratnam4.gifhttp://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspxsignificant
breakthroughs in understanding Fragile XFRAXA-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.
https://sfari.org/images/in-brief/FragileXsistersarticle.jpg/image_mediumhttp://www.fraxa.org/fragilex/treatment/Medical
Concerns due to FXSVision problemsUnable to focus eyesight on an
objectApproximately 10% may suffer seizuresEar InfectionsHigh blood
pressure during adulthood
http://childdevelopmentinfo.com/wp-content/uploads/2013/11/add-adhdadhd-medications-children-medication-list-side-effects-research.jpghttp://www.fraxa.org/fragilex/treatment/Treatment
of FXSThere are currently no cure for the conditionTreatments are
availableOccupational TherapySpeech Therapy. Speech can help a
child improve their communication and social skills. Behavioral
TherapyMedication to suppress symptomsSpecial EducationWith medical
advancement, Early detection and intervention are now
possiblePrescription 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 cope with mainstream society.
http://www.chp.edu/cs/Satellite?blobcol=urldata&blobheader=image%2Fjpeg&blobkey=id&blobtable=MungoBlobs&blobwhere=1294152140381&ssbinary=true&eHA_media_type=.jpghttp://www.fraxa.org/fragilex/treatment/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/image/4277668-3x2-340x227.jpgEffects
of Fragile X on Childrenoften 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.aspxEffects
of Fragile X on Childrenwill 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
child become older.
http://news.stanford.edu/news/2004/march17/gifs/fragilex.jpghttp://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspxNevaehs
Special NeedsAccommodate 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 activitiesPhysical
EnvironmentProvide her with enough physical spaceChildren 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_8-1000-contemporary-home-gym.jpgPhysical
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://usefulbeautifulhome.com/wp-content/uploads/2013/06/Toy-Storage-at-UsefulBeautifulHome.com_.jpgPhysical
Environment (cont)Bean bags, small swings can often be used to calm
a child with FXSRemove unnecessary barriers and allow free traffic
flow. (adaptive learning environment notes.)
http://www.shopperheads.com/media/catalog/product/cache/1/image/9df78eab33525d08d6e5fb8d27136e95/k/i/kids_aqua-500x501_large.jpegPhysical
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 StrategiesEvery 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/images/root/specialeducation.jpgTeaching
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 cuesWe 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/insY5CDWVos/s1600/DSCF8940.JPGTeaching
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 faceUse 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.jpgTeaching
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_xr-I/AAAAAAAAUYo/WKjJx7Lx77M/s640/Positive+Behavior.jpgTeaching
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 exercisesPlaying with putties and
clay will help her develop her muscle toneFinger tracing and
drawing in air will improve her hand-eye coordinationTying shoes
and writing will increase her fine motor muscle coordinationMake
sure these exercises become routine for her; it will be greatly
benefit her physical development in the long run.
As Part of a GroupKeep class sizes small so she can become
familiar with individual classmatesDue 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/_LqmtIoDKXRg/S9rxy7aLq7I/AAAAAAAAARY/1HNxRc_vqsU/s1600/35320686.jpgAs
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 WholeNevaehs 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.html
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.jpgAdventure
Place Child and Family CentreMcNicoll Public School155 McNicoll
AvenueToronto, Ontario M2H 2C1Telephone:416 744 7650Fax:416 744
8055Main Office Hours of OperationMonday - Friday8:30 am to 4:30
pmWebsite:http://www.adventureplace.ca/
AgenciesAdventure 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 Hospital150 Kilgour
RoadToronto, Ontario, CanadaM4G 1R8Tel: 416-425-6220Toll Free:
1-800-363-2440Website: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 Centre1580 Yonge StreetToronto,
OntarioM4T 1Z8Tel: 416 935-0200Fax: 416
935-0300Website: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 RoadScarborough, ON,Canada M1S 5E2Tel: (416)
321-1445Office Hours:Mon-Thurs. 9:00am-7:00pmFri.
9:00am-4:00pmAgencies (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 ClinicFragile
X Research Foundation of Canada/Fragile X Clinic167 Queen Street
WestBrampton, OntarioCanada L6Y 1M5Phone: 905-453-9366Website:
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=113,0,0,1,0,0FXRFC 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/
referenceClass
noteshttp://es.wikipedia.org/wiki/S%C3%ADndrome_X_fr%C3%A1gilhttp://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-x-p1167-q227932.htmlhttp://www.news-medical.net/health/What-is-Fragile-X-Syndrome.aspxhttp://syndromepictures.com/wp-content/uploads/2011/09/Fragile-x-syndrome-pictures.jpghttp://www.care.com/special-needs-caring-for-a-child-with-fragile-x-p1167-q227932.htmlhttps://runkle-science.wikispaces.com/file/view/autosomal_dominant.jpg/30631549/autosomal_dominant.jpgreferencehttp://www.fraxa.org/fragilex/treatment/http://www.care.com/special-needs-caring-for-a-child-with-fragile-x-p1167-q227932.html:http://www.adventureplace.ca/http://www.adventureplace.ca/:http://www.hollandbloorview.ca/http://www.familycare.utoronto.ca/parenting/snd.htmlhttp://www.hollandbloorview.ca/about/accountability/strategicplan/visionmissionvalues.phphttp://www.cicc.cahttp://www.cicc.ca/about/http://www.aislingdiscoveries.on.ca/