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Fragile x syndrome 2
1. MEETING THE NEEDS OF
CHILDREN AND FAMILIES
By: Sophia Hagley
Teacher : Lisa McCaie
Due Date: Tuesday, April 2nd, 2013
2. THE NEEDS OF THE FAMILY
Nevaeh has been diagnosed with Fragile X Syndrome ,
her parents barely speak very little English (only
Spanish)
When their family doctor explained Nevaeh’s Special
needs to her parents they did not understand what it was
As the lead of ECE in the room, co workers ask me to
explain Nevaeh’s special needs to her parents and ask
what we could do
3. FRAGILE X SYNDROME
It's a single gene in the brain cells that
shuts down that causes Fragile X
syndrome. Scientist discovered that the
defect in the gene is by a marker on the
X chromosome passed on by the
mother that causes FXS. This gene
shuts down and cannot manufacture the
protein it normally makes effectively
for both the normal brain development
and functioning.
This causes struggles with
developmental delays in cognitive and
language, Behavioral problems,
repetitive speech and autistic - like
behaviors. It effects both genders males
and female but more severe in boys.
4. PHYSICAL SIGNS
Long face, large ears, flat feet
Flexible joints & low muscle joints
Large Body Size
Large Forehead
Long Face
Soft Skin
5. INTELLECTUAL AND BEHAVIORAL
CHARACTERISTICS
Males may show:
Delayed in speech
Delayed motors skills
Repetitive and unclear speech
Hyperactivity and Short attention spans
Autistic like behaviors such as; poor eye contact, hand
biting, hand flapping, sensitive to the environment(such
as noise and crowds)
Females may show the symptoms above or dissimilar
characteristics
6. INTELLECTUAL AND BEHAVIORAL
CHARACTERISTICS CONTIN.
Such as:
Learning disabilities
Short attention span
Shyness
Social anxiety
As the child get older the characteristics reduce especially
the emotional one.
7. HOW COMMON IS FXS
1 in 4,000 boys and 1 in 6,000 girls of all
races and ethnic groups are effected by
Fragile x Syndrome
Boy are have it more severe, mostly in
mental impairment and shows some signs of
autism.
Girls get a milder form FXS because they have
two X chromosomes, one that works properly and
the other one does not work at all. The reason of
this being is female produce enough of FMRP
(Fragile X Mental Retardation protein) that fills
most of the body needs.
8. MEDICAL CONCERNS
As a child health problems may include:
Ear infections
Eyes problems- the lack of ability to be able to focus
both eyes on an object
Seizures
Toilet training problems
As children become adults they may face:
High blood pressure
scoliosis
9. IS THERE AN CURE TO
FRAGILE X SYNDROME?
Research has not found a cue yet, but there is many
therapies available to help assist your child
Such as:
Special education
Speech and language therapy
Occupational therapy
Medication
11. MODIFICATION IN THE
PHYSICAL ENVIRONMENT
Visual communication such as picture
schedules, drawings, photos. By the
child pointing to make indicate a choice
or that he or she wants.
Have fragile x students sit in front of the
classrooms off to the side because they
can be hypersensitive to the sound and
movements. This will arrangement
reduce the numbers of distractions and
offer a “safe free zone” for the child in
and out of the classroom.
12. TEACHING STRATEGIES
Provide opportunities to practice stable, predictable routines by
using first and then boards. This can teach sequence order to
know what will come next, by not knowing this can be scary
for the child.
Physical presence; moving closer to the child to let them that
you are there if needed and encourage them to try first before
jumping in.
Use tangible items such as favorite items, activities or toys of
the child, this will motivate the child to help understand the
desired task and receive items when the child attempts or
complete desired action.
Prompt and fading to give the child a hint or cue to know what
next. By modeling or demonstrating how to do skill or action
while the child imitates it.
13. THE CHILD AS LARGER GROUP OF CHILDREN
Maintain typical, carry on with your daily routes and
keep your life normal as possible. Continue with your
activities that were important to help keep your family
mindset both in mind
Research and learn everything you need to know about
your child’s disability. Listen to inspiration stories from
other parents and children who is already going through
the similar situation as you.
15. THE FRAGILE X RESEARCH FOUNDATION OF CANADA
The fragile X research foundation is a Fragile X Clinic at the Surrey
Place Center in the heart of downtown Toronto, It is a national non–
profit, tax exempt that been opened since June 2006. This community
based organization is ran by volunteers of people who are parents or
health professionals.
It provides full ranges of services and interventions such as assessments,
audiology, speech and language therapy , complex diagnosis, counseling
and behavioral therapy
These service of free of charge to their clients because they receive
funding through the Ministry of Community , family and children
services.
http://www.fragilexcanada.ca/index.php?home&lng=en
16. The Fragile X Research Foundation of Canada location
167 Queen Street West
Brampton, Ontario
Canada L6Y 1M5
Phone: 905-453-9366
info@fragilexcanada.ca
The Fragile X Research Foundation haves support groups located all
throughout in other provinces such as Kitchener, Quebec, British
Columbia and Alberta.
