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/