fragile x syndrome 2
TRANSCRIPT
MEETING THE NEEDS OF CHILDREN AND FAMILIES
By: Sophia Hagley
Teacher : Lisa McCaie
Due Date: Tuesday, April 2nd, 2013
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
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.
PHYSICAL SIGNS
Long face, large ears, flat feet
Flexible joints & low muscle joints
Large Body Size
Large Forehead
Long Face
Soft Skin
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
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.
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.
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
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
MEETING THE NEED IN THE CHILD CARE CENTER
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.
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.
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.
AGENCIES OR RESOURCES
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
THE FRAGILE X RESEARCH FOUNDATION OF CANADA
The Fragile X Research Foundation of Canada location
167 Queen Street WestBrampton, OntarioCanada L6Y 1M5Phone: [email protected]
The Fragile X Research Foundation haves support groups located all
throughout in other provinces such as Kitchener, Quebec, British
Columbia and Alberta.
REFERENCES
1. https://encrypted- tbn0.gstatic.com/images?q=tbn:ANd9GcQ2TjxsbLpZ5W8beljJFi1oaq7FX4Oau6_GHpAKlbQW6Bko_Vxp-A
2. http://healthlineinfo.com/fragile-x-syndrome-definition-symptoms-diagnosis-prevention-and-treatment.html
3. http://www.cidpusa.org/fragil%20x.htm
4. - http://www.childrenshospital.org/az/Site1788/mainpageS1788P1.html ( information)
5 .http://connectability.ca/visuals-engine/firstthen-board-popup/
6. http://ts4.mm.bing.net/th?id=H.4604244571850831&pid=1.7&w=250&h=60&c=7&rs=1
7. http://reinventingmommy.blogspot.ca/2012/10/goldfish-crackers.html
8. http://www.schwimmerlegal.com/2006/12/real-cars-v-cars.html
9. http://www.compoundw.ca/about-skin-tags/when-to-see-a-doctor
10.. http://www.fragilexcanada.ca/picture/upload/File/Summe06.pdf