GEOMARJoubert Syndrome

Geomar needs

Geomar seems to be developmentally delay in all areas of development. This can affect his emotional development, Geomar may develop low self-esteem.

www.specialeducationteacher.me: Joubert Syndrome. (n.d.).www.specialeducationteacher.me. Retrieved April 3, 2013, from

Support to families

Mother Support Groups - Parent Child Center NYC. (n.d.). Parent Child Center NYC. Retrieved April 3, 2013, from http://www.theparentchildcenter.org/mother-support-groups

Yesterday, his mom was told that Geomar has Joubert Syndrome.

She asked you, What do I do now?” and begins to weep. What I can do for Geomar mother is advise her to talk to her doctor and support her with agencies

Geomar special needs

Leader), D. T. (n.d.). I run so someday she may run with me... | causes.com.Causes.com: Build Awareness, Fundraise, and Advocate for Change | causes.com. Retrieved April 3, 2013, from http://www.causes.com/actions/1679467-i-run-so-someday-she-may-run-with-me

What is Joubert Syndrome

Joubert syndrome is a disorder that affects many parts of the body. The signs and symptoms of this condition vary among affected individuals, even among members of the same family.

The hallmark feature of Joubert syndrome is a brain abnormality called the molar tooth sign, which can be seen on brain imaging studies such as magnetic resonance imaging (MRI). This sign results from the abnormal development of regions near the back of the brain called the cerebellar vermis and the brainstem. The molar tooth sign got its name because the characteristic brain abnormalities resemble the cross-section of a molar tooth when seen on an MRI.

Most infants with Joubert syndrome have weak muscle tone (hypotonia) in infancy, which evolves into difficulty coordinating movements (ataxia) in early childhood. Other characteristic features of the condition include episodes of unusually fast or slow breathing in infancy and abnormal eye movements. Most affected individuals have delayed development and intellectual disability, which range from mild to severe. Distinctive facial features are also characteristic of Joubert syndrome; these include a broad forehead, arched eyebrows, droopy eyelids (ptosis), widely spaced eyes, low-set ears, and a triangle-shaped mouth.

Joubert syndrome - Genetics Home Reference. (n.d.). Genetics Home Reference - Your guide to understanding genetic conditions. Retrieved April 3, 2013, from http://ghr.nlm.nih.gov/condition/joubert-syndrome

Joubert Syndrome - UW Hindbrain Malformation Research Program. (n.d.).UW Departments Web Server. Retrieved April 3, 2013, from http://depts.washington.edu/joubert/jouber

http://www.youtube.com/watch?v=Hiz6GOYiwMk

I had found a touching YouTube clip on a mother who is supportive of her child who as joubert syndrome

Be Inspired by a girl with Joubert's Syndrome - YouTube. (n.d.). YouTube. Retrieved April 3, 2013, from http://www.youtube.com/watch?v=Hiz6GOYiwMk

Changes that we may have to make

Geomar would need some changes to his environment know that we know he as joubert syndrome.

that way he would be in an inclusive environment that would let him reach his full potential

Bracilla

“This device is a tactile writing system used by children who are blind or visually impaired. It is a series of raised dots on that can be read with feel of their fingers.”(Inclusion of children with special needs –reading package)this should be good for Geomar in his environment because with children joubert syndrome may have vision impairment.

Standing Frame

“It is an assistive technology that can be used by a child who relies on a wheelchair for mobility. It provides support for children in the standing position allowing children to interact at eye level with others. (Inclusion of children with special needs –reading package) This will be good for Goemar because children with joubert syndrome to loose muscles tone . This way he may feel included when engaging with other children in activities.”

Using visuals

“In children Joubert they may loose their vision so it appears that labelling and depending is a good change to the environment”

“You may have to have enhance picture is needed”

“You can have routines in visuals that way Geomar knows what to expect through out the day.” (Inclusion of children with special needs –reading package)

Taking on Third: Classroom Updates. (n.d.). Taking on Third. Retrieved April 3, 2013, from http://takingonthird.blogspot.ca/2011/08/classroom-updates.html

Flexibility and Stability

“ you should be consistent with daily routines”

“Create a schedule that the children can understand”

“ let them know that your there to support them at anytime”

“this would be good for Geomar because children learn best through repartition”

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Visual on routines

“you should have before and then chart with your daily routines that way Geomar know what to expect through out his day” (Inclusion of children with special needs –reading package)

Do You Use Visual Schedules? | Applied Behavioral Strategies. (n.d.). Applied Behavioral Strategies | "You have proven that the 'impossible' can be done…and if you can get a boy that had so many challenges like eating food – to eat…you sold me. Thank you so much!" ~ A. Stevens, parent of an ABS client. Retrieved April 3, 2013, from http://appliedbehavioralstrategies.wordpress.com/2011/11/08/do-you-use-visual-schedules/

Changes to the environment

Zoom text

“I think this would be appropriate for Geomar be cause children with joubert syndrome may develop vision impairment . With zoom text this device enlarges and enhances everything on the computer screen, making applications lager, easier to see and use”. (Inclusion of children with special needs –reading package)

The physical Environment

I would make sure the environment is wheel chair assailable

All the furniture is child size

The Americans with Disabilities Act and Family Child Care - Tom Copeland's Taking Care of Business. (n.d.). Tom Copeland's Taking Care of Business. Retrieved April 3, 2013, from http://www.tomcopelandblog.com/2012/08/the-americans-with-disabilities-act-and-family-child-care.html

Teaching strategies

Descriptions

Descriptions “According to reading

package use short simples phrases to descrribe your action and the child’s actions”

“This seems t be appropriate for geomar because he would learn words to his action”

“Which can teach language” (Inclusion of children with special needs –reading package)

Enhance on Geomar environment

•“You would make object bigger just in case Geomar seems to have difficulty picking up small object this may make is easier.” Connect ability –prompting and fading notes wks 7

Simplifying activities • “you would reduce the number of steps within activity for Geomar by removing pieces or covering numbers.” (Inclusion of children with special needs –reading package)

•Connect ability – notes wks 2

Prompting and Fading

• “as a teacher I would use a lot of prompting and fading with Geomar. “• “hand over hand assistance” •“Modeling and demonstration “• “Gestural”•“Visual”•“Positional prompts” •Connectability –prompting and fading notes wks 7

Making Choices

•“This would provide Geomar opportunities for learning names of objects and the value of expressing his own opinion”.

Modeling

Modeling will be appropriate for Geomar we can get other children to help each other because childe appear to learn best when they see another child doing positive activities this will appear to teacher Geomar:• “Socializing skills” •“ Independence” • “High self esteem” Strategies for inclusion- video notes wks7

Collaboration

When working with parents with children of special needs according to Adaptive learning Environment ) “ be open to that learning and expectation of others” this would be good support for Geomars family that way everyone that around him will be on the some page as to what best for his development.

Use positive reinforcements

“Reinforcements would be good for Geomar this would motivate him to keep expanding on his development” .• “ praises” • “a special activity” • “music”•“ toys” “These can be used as reinforcements for a child learning a new skill. This would help Geomar stay on track and help him understand what expected of him” .

Reading package- supported inclusion pg 2-3

Agencies

Children family doctor

Address: 4002 Sheppard E, Scarborough, ON M1S 4R5Phone:(416) 283-1313• Dr andrew Chung is a family doctor• this would be good for Geomar because he would be able to get his regular check up that he would need • “Dr Andrew Chung serves for children from birth until adulthood.”•“ you would have to book by appointment “

Public health Nurses

“provides information on healthy growth and development of children, rescores , and supports and services in the community”

this would be good for Gemar because he has joubert syndrome this my affect his breathing and his family would need to call someone in case of emergencies.

“Toronto Public Health (TPH) reports to the Board of Health and is responsible for the health and well being of all 2.7 million residents. TPH has focused on protecting and promoting the health of Toronto residents since 1883 by:” For general information about Toronto Public Health programs and services:

Phone: 3-1-1 24 Hours a day To speak to a health professional for free,

confidential information and advice; or to register for public health programs, such as food handler training and pre-natal classes:

Phone: 416-338-7600, for people who are deaf, deafened or hard of hearing call 416-392-0658 for TTY

8:30am – 4:30pm Monday to Friday publichealth@toronto.ca

http://www.toronto.ca/health/contactus/in

About Sick kids Hospital.“The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada's most research-intensive hospital and the largest centre dedicated to improving children's health in the country. As innovators in child health, SickKids improves the health of children by integrating care, research and teaching.”“With a staff that includes professionals from all disciplines of health care and research, SickKids provides the best in complex and specialized care by creating scientific and clinical advancements, sharing knowledge and expertise and championing the development of an accessible, comprehensive and sustainable child health system. ”

Sick kids hospital The Hospital for Sick Children555 University AvenueToronto, OntarioCanadaM5G 1X8General inquiries: 416-813-1500Patient information/locating: 416-813-6621Ontario Poison Centre: 416-813-5900Telehealth Ontario info line: 1-866-797-0000• there are two ways yo refer a client 1.” electronic Child Health Network (eCHN) e-Referral. • 2. The original Ambulatory Referral Management system (ARMs)”•“ they have an emergency room “• “sick kids population they serve is for kids”•http://www.sickkids.ca/search/search.aspx?activePillar=hospital

Delton AssociatesOur counselling services assist not only your child but also you as parents and other family members. When one member of a family is experiencing difficulties, it often affects all members. Involving all members of the family and bringing together their full power and support can strengthen the ability resolve the troubling issues in a mutually respectful and cooperative manner. and we can discuss an appropriate referral to meet your needsFor inquires or appointments feel free to call our Client Service Teamtoll free: 1.888.245.5516Fax us: 519.787.0773The population they serve is everyone http://www.drdandalton.com/index.cfm?page=OurPurpose

Vision Institution16 York Mills Road vision institution located at York Mills Centre16 York Mills RoadSuite 110 (Ground Floor)Toronto, ON M2P 2E5Canada  Tel: (416) 224-2273 Fax: (416) 224-9234 Send us an email“They serve people of all ages Regular and specialized eye care services are provided to the general public and to persons with special needs.” “Vision Institute and an appointment can be made by faxing a referral letter to the InstituteThey provide emergency care and open Monday- Friday and time fluctuates” http://www.visioninstitute.optometry.net/PracticeTemplates/index.aspx?user_data_id=499&menu_id=552

Agency for Joubert Syndrome

“This book has been created for parents who have decided to make education and research an integral part of the treatment process.”

“In this book doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to joubert syndrome”

http://www.amazon.com/Official-Parents-Sourcebook-Joubert-Syndrome/dp/0497009889

Image Reference image of child with bracilla - Steinman., LeJeune, B. A., Kimbrough, B. J., & T.;, B. (n.d.). Developmental Stages of

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