Naveah has been diagnosed with Fragile X Syndrome.
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 translationshttp://www.bermudahospitals.bm/health-wellness/conditions-A-Z.asp?chunkiid=254010The link above explains the Fragile X syndrome in Spanish.
―Fragile X syndrome is the most common genetically-inherited form of mentalretardation known‖.―Children with Fragile X often appear normal in infancy but develop typicalphysical characteristics later on‖.
― 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)
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.
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.
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.
Children with fragile X may have specific learning disabilities that may require medication andtherapy.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 familys needs aswell.Speech language therapists: They can help children improve their pronunciation, help themcomplete 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
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
In the environment, we can use adaptations, such as physicalspace, toys, visuals, materials. It is important for children with Fragile X to havea 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.
It is important for children with Fragile X syndrome to have a quiet space.
―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
―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_76AHaARArVxkCcsjlulAVto
“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
“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”
―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
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.
Parents need support by coping with the feelings that come when your child isdiagnosed with a special need. When Naveah‘s parents realize what their child‘sspecial 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.
―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‖.
―Maintaining a sense of normalcy: Although your regularroutine may become centered around your child with fragile X,try to keep your life as normal as possible. Continue doingactivities that were important to you. Maintaining some senseof normalcy will help your family be in the best mindset to helpyour child‖.―Keeping a journal: Keeping a journal of your childs health andmedical care can be helpful for both you and your childsmedical team, especially if you ever need to change specialists.You can also record your emotions and look back to reflect onhow you have managed each phase of the situation‖.
“Researching and learning: Learn everything you can about your childs condition and the treatments available. Read inspirational stories about parents and children who have been through similar situations‖.
Social/Emotional DevelopmentPhysical DevelopmentIntellectual DevelopmentLanguage DevelopmentCognitive Development―Fine motors and gross motorsDelayed speech, repetitive speech.Anxiety , shyness, attention deficit hyperactivity disorder (ADHD), autistic-like behavioursensitivity to touch or dislike of loud noises, difficulty making eye contact,and aggression‖.―Medical concerns : heart murmurs, vision problems, ear infections, reflux andseizures‖.―Their physical characteristics are long and narrow face, prominent ears, poor muscletone – which can cause crossed eyes or a squint, curve in the spine or slack facemuscles, flat feet, and loose joints (double joints)‖.
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 samebeliefs as the families.They can pray with the families during your treatment experience.
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.
Our Mission:―The Leslie Dan Faculty of Pharmacy is committed to internationally significant innovation in the discovery and mobilization of pharmaceuticalknowledge in the pursuit of health‖. http://www.pharmacy.utoronto.ca/about-us/our-mission-visionThey 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 FloorLeslie Dan Faculty of Pharmacy, University of Toronto144 College StreetToronto, Ontario Canada M5S 3M2Tel: (416) 978-4494Fax: (416) 978-8511E-mail: firstname.lastname@example.org
Mission and Vision“United Families of Eastern Ontario is a coalition of family groups and individuals joining together toimprove the lives of children and adults with developmental disabilities in Eastern Ontario by ensuring thatwe 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 onevents, meetings, government legislation, supports and services ...‖.“Raising awareness within the general public on issues of concern‖“Increasing UFEOs membership in order to have a strong UNIFIED FAMILY VOICE in EasternOntario”Vision“Citizens with developmental disabilities have access to the same opportunities and choicesas other Ontarians”.―United Families of Eastern Ontario strives to have representation from all family-focused groups inEastern 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 tosubmit supporting documents to define developmental disability.1-855-376-3737
The Fragile X Research Foundation of Canada HeadquartersOur mission―The Fragile X Research Foundation of Canada (FXRFC) is a non-profit, tax-exempt charity run by parents and volunteer professionalsthat is dedicated to raising awareness of Fragile X syndrome, funding biomedical research for improved treatment andultimately, 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 hopethrough advances in research, they founded the Fragile X Research Foundation of Canada (FXRFC)‖.167 Queen Street WestBrampton, OntarioCanada L6Y 1M5Phone: email@example.com
Surrey Place CentreMission:―Surrey Place Centre provides specialized clinical services that are responsive to individual need andpromote health and well-being. In addition to our direct service role, we facilitate system-wideaccess to information and supports. Our leadership in research, evaluation and education is directedtoward 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 developmentaldisabilities and/or autism spectrum disorders‖.―You must call us to be assessed for a developmental disability. If you have been previouslydiagnosed with a developmental disability, a call will be required to gain access to our specializedgroups and services‖.Although this centre does not focus on Fragile X syndrome, they still can help Naveah withdevelopmental 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 pmTuesday, Wednesday, Thursday: 8:30 am to 8:30 pm
Aisling Discoveries Child and Family Centre120 Middlefield RoadScarborough, ON,Canada M1S 5E2Tel: (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
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, firstname.lastname@example.org) for further information.
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.
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‖.
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‖. .
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.
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‖.
The YMCA The YMCA ―Ys have many activities and camps that include kids with special needs, look for the one closest to you‖.
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http://www.pharmacy.utoronto.ca/about-us/our-mission-visionhttp://www.nshss.org/images/newsletter/university-of-toronto-logo.jpg?sfvrsn=0 Retrieved from google 03/23/13http://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 google03/23/13http://www.itbusiness.ca/upload/IT/News/zThe_H477.gif Retrieved from google 03/23/13http://www.sickkids.ca/PaediatricLaboratoryMedicine/Laboratories-Services/Molecular-Genetics-Laboratory/Test-Services-Available/Fragile-X-Syndrome.htmlhttp://careerservices.senecac.on.ca/media/web_ready_logos/CardLogo.gif Retrieved from google 03/23/13www.card.cahttp://c10566323.r23.cf2.rackcdn.com/03-28-05_uplifting_original.jpg Retrieved from google 03/23/13www.gymboreeclasses.comhttp://www.fragile-x.ca/http://www.torontowaterfrontmarathon.com/en/charity/fragilex.htmhttp://fragilexcanada.ca/index.php?id=5,0,0,1,0,0http://www.ufeo.ca/en/ufeo/Mission_and_Vision_p3031.htm lhttp://www.surreyplace.on.ca/Pages/Home.aspxhttp://www.aislingdiscoveries.on.ca/
Recreationalhttp://www.harbourfrontcentre.com/images/footer/2013/camps-ad.jpg Retrieved from google 03/23/13www.harbourfrontcentre.comhttp://www.stepsprograms.com/images/logo_steps.png Retrieved from google 03/23/13www.stepsprograms.comwww.track3.orghttp://elipse.ca/melanie/images/Track3Logo2.jpg Retrieved from google 03/23/13http://www.ldsa.ca/wp-content/uploads/2011/08/soc_can_bil_col.jpg Retrieved from google 03/23/13www.specialolympics.cahttp://home2.btconnect.com/ymcataunton/Quickstart/ImageLib/YMCA_Website.jpg Retrieved from google 03/23/13www.ymca.ca Spanish Linkhttp://www.bermudahospitals.bm/health-wellness/conditions-A-Z.asp?chunkiid=254010 BookFernandez, I., (Understanding Fragile X Syndrome, p. 72) 2011, Jessica Kingsley Publishers,. London, UK NotesAdaptive Learning Environments notesTextbook Reading Package, Inclusion of Children with Special Needs, 2011