Mobility/Motor impairment by

Spina Bifida

boyesh23_ — 2023-11-21 00:48:39 UTC

Spina bifida is a disorder that develops during pregnancy causing the spine to not develop correctly or completely. When a person has Spina bifida it means their neural tube does not close completely, and some of the bones of the spine do not close. Spina bifida can also cause abnormalities in the brain because the spine is stopped from proper development so sometimes the brain is to.
Occulta: The most common type of Spina bifida. A small layer of skin covers the opening of the spinal vertebrae. This type of Spina bifida rarely has symptoms but the possible symptoms are bladder and bowel problems, muscle weakness and scoliosis.
Myelomeningocele: Occurs when parts of the spinal cord pop through the open part of the spine. The spinal cord going through causes damage and fluid build up around the brain. Symptoms include back protrusion, loss of feelings in the legs, lack of touch sensation, cognitive impairments and bladder and bowel problems.
Meningocele: Least common type of Spina bifida and occurs when membrane surrounding the spinal cord protrudes through the opening causing a lump in the child’s back. Meningocele can be fixed by surgery and usually does not cause damage or developmental problems.
Diagnosis: Can be diagnosed through prenatal testing such as blood tests, ultrasounds once the second trimester has started, testing the levels of AFP in the blood if it is high it means baby might have Spina bifida. Spina bifida can also be diagnosed after birth from an x-ray or a lump that has formed on the back.

Cerebral palsy(CP)

boyesh23_ — 2023-11-21 01:28:06 UTC

A group of neurological disorders that effects body movement and muscle coordination. Cerebral palsy is caused by brain damage or abnormalities during development. Their is a wide range of symptoms such as , lack of coordination, weakness in arms or legs, stiff muscles, involuntary movements/shaking, hyperactive tendons, and delays in motor skills.
Types of cerebral palsy
Hemiplegia/Hemiparesis: Affects an arm or leg and sometimes both. Speech is delayed and person might develop scoliosis.
Diplegia/diparesis: Affects the legs and causes hyperactive tendons.
Quadriplegia/quadriparesis: person can not walk and might also have an intellectual disability.
Dyskinetic: slow and uncontrollable movements in the hands, feet, arms or legs. The muscles in the face are hyperactive. A person with dyskinetic cerebral palsy might also have hearing problems, difficulties walking and problems with muscle coordination.
Ataxic: Affects balance and depth perception. Creates difficulty with precise movements and voluntary movements.

Mixed Types: This means a person does not have symptoms that fit into one category of cerebral palsy.
Diagnosis: Cerebral palsy is usually diagnosed within the first 5 years of life. Doctors can do various tests to evaluate motor skills, muscle tone, motor control and coordination.

Muscular dystrophy

boyesh23_ — 2023-11-21 01:53:05 UTC

Muscular dystrophy is a genetic condition that effects how a persons muscles function. Over times symptoms of muscular dystrophy get worse and depending on the type it effects the ability to walk, preform daily activities, and move. Muscular dystrophy can develop any time. Their is a over 30 types of muscular dystrophy.
3 common types
Duchenne muscular dystrophy(DMD):
-most common type -mostly affects males
-affects heart and lungs
Becker muscular dystrophy(BMD)
-Mainly affects males. - develops between 5-60
-Typically develops in teenage years
Myotonic dystrophy
- Often diagnosed in adulthood - effects men and women
- difficulty relaxing muscles. - can effect heart/lungs
- Can cause diabetes
Diagnosis: Doctors will preform muscle and neurological exams. Diagnostic tests include,
Creatine kinase blood test: Elevated levels can indicate muscular dystrophy.
Genetic tests: can identify gene mutations.
Muscle biopsy: under a microscope can see signs of muscular dystrophy.
EMG: test muscle activity and nerves.

Tristram's Story: Living with Spinal Muscular Atrophy

carmaedirecto — 2023-11-21 17:41:09 UTC

Tristram’s narrative is that his parents noticed that he was becoming weaker and weaker while he was standing when he was 18 months old. He was properly diagnosed with SMA when he was 7 years old, but as he grew older, the upside was that he came to terms with his normal as he never felt any different despite not being able to recall walking as a small child. They quickly came across SMA Australia, which played a crucial role in assisting them in settling in. He did have jealousy issues as a small child because all of his buddies seemed to have wonderful lifestyles because of all of his able-bodied sports. After starting bagger football (modified football) in 2011, he became enamoured with the sport and joined the Australian paraplegic squad, enjoying the athletic side of this. Physical access is the most important factor that many people are unaware of, and it can be difficult as people have preconceived notions about persons with disabilities and treat them as though they are incapable of performing numerous tasks. However, by managing a school program and speaking with children about impairments, he is changing lives and inspiring future engineers. Throughout the entirety of his narrative, Tristram expresses gratitude for his incredible support system and how they enable him to continue fighting and changing the world in his daily life.

Siena's Story: Fetal Surgery for Myelomeningocele

carmaedirecto — 2023-11-21 17:42:34 UTC

During the 20-week ultrasound, Meagan and her husband Nathan were told their baby (Siena) was diagnosed with myelomeningocele, the most severe form of spina bifida, during Meagan's pregnancy. During the obstetrician’s explanation of the diagnosis and the couple’s pregnancy options, Meagan recalled seeing a health video at Harvard Medical School that showed a prenatal surgery used to treat MMC. The family received information regarding the potential postpartum prognosis and fetal surgery statics from Robert Wilson, Head of the Department of Obstetrics and Gynecology at the University of Calgary. Which is located close to the family’s home in Alberta, Canada. Dr.Wilson was a member of the Children's Hospital of Philadelphia (CHOP) team that established the foundation for MMC fetal surgery. He then guided the couple to speak to Stephanie, the senior genetic counsellor, who guided them through today’s evaluation meeting with several specialists, the team several specialists, the team was incredibly outstanding. Every member provided the family with support and emotional insurance for the procedure that would change baby Siena’s life. Overall, as of April 13, 2023, from the post, Siena is 7 years old and doing a fantastic job of managing her life with the assistance of CHOP and other special programs in Calgary. According to what I’ve read in this post, this family was fortunate to have met with incredible emotional support professionals in the medical industry who would assist them and their children to thrive in a world full of opportunities. To create opportunities for everyone to live, we humans need to support one another as we grow in the environment. Additionally, this family was fortunate enough to have a stranger cover their medical expenses; giving someone something as large as that fulfills a lot of goals.

Ciarlo's Spina Bifida Story: Look at him now

carmaedirecto — 2023-11-21 17:43:32 UTC

On the 19-week ultrasounds, Kira and her husband, Ken, learned that their son, Ciarlo, had spina bifida. They were treated with the utmost care, and the doctors at their ultrasounds told them straight about the situation but sent them to the Children’s Hospital and Philadephia (CHOP). Extensive experience with prenatal diagnosis and treatment of Spina Bifida, including fetal surgery, as well as a specialized Spina Bifida program. The hospital planned a c-section delivery, the day after Ciarlo was born the hospital managed to give him surgery to repair the hole in his spine. Today Ciarlo is growing up as an intelligent, friendly boy who continues to be followed by CHOP’s Spina Bifida program. Again like Siena’s story the chance that these two families had with the amazing work of The Children’s Hospital of Philadelphia. Keeping these facilities gives the world such amazing opportunities for many. We need to create more places like these for more opportunities for those who need the chance but cannot get help.

Living with Cerebral Palsy: The Gandee Family Story

carmaedirecto — 2023-11-21 17:44:21 UTC

The story on Hunter Gandee, who was named the high school athlete of the year by Sports Illustrated in recognition of his and his family’s efforts to raise awareness of cerebral palsy. All of this was done in support of his younger brother Braden, who also suffers from this illness. To raise awareness of the difficulties faced by kids like Braden, they organized a walk known as the Cerebral Palsy Swagger, in which Big Brother Hunter travelled 40 miles while carrying Braden. Braden had high expectations for his family; his sister treated him with normalcy and love, while his brother instilled in him a strong ethic. Afterwards, at school, he is Braden’s best friend’s helper and Braden helps his best friend in all of his activities. “People with CP are just like everyone,” he says. They struggle with things even when they are skilled at them. Nothing should be able to stop you. (Gandee, Braden) I’ve learned from this family- especially from Braden and Hunter - to never allow anything or anyone to stop them from achieving their goals. No matter what challenges you’re facing in life, showing kindness to others will go a long way toward helping you overcome them. After all, everyone has a purpose in life, so treat others the way you want to be treated and they want to be treated.

Nichole Cheron's Story: Spinal Muscular Atrophy

carmaedirecto — 2023-11-21 17:45:13 UTC

This is Nichole Cheron’s story; she was born with spinal muscular atrophy, a hereditary condition that causes the muscles in the body to gradually deteriorate. For the majority of daily duties, she is completely dependent on a wheelchair and full-time attendants. She was stranded in Portland, Oregon, during an uncommon winter storm in 2008. She felt as though her muscles were losing their ability to support her body, which may have been fatal during those eight days. Nichole discovered that the Oregon Office of Diablity and Health had created a training program for emergency preparedness called “Ready Now!” The most crucial lesson she has picked up is the need to have a backup plan. Her ability to live freely with a disability was strengthened and her sense of empowerment increased as a result of the trading. It also shows people with disabilities that they scan more to take care of their situation in a crisis than anyone else can. Nicole has taught me that there's always someone or something that will be able to help you with whatever you are facing in your life in this day and age.

Nikia's Story: Living with Spina Bifida

carmaedirecto — 2023-11-21 17:45:57 UTC

Nikia was born with Spina Bifida, a birth defect, the major challenge that she faced was that spina bifida has a hard time with bowel and bladder control. Nikia faced bladder control as the most difficult aspect of her life and it was hard to control, having her move and find a bathroom every 5 minutes, stopping her daily life. Walking also is difficult for some people and people may have to use braces, crutches, walkers or wheelchairs. For Nikia, she used braces to add to her medical problem facing irritation to her skin when she is using the tool. But with all this, her succession was that she made a smooth transition from education to employment graduated with honours and made it to the dean's list. And with the support of a vocational rehabilitation program a federally funded state program, she was able to land a job with a federal agency just a week after graduation. Being a support for many people, we can help everyone achieve all their goals. This story presents how much our everyday improvements toward people with disabilities may be beneficial to creating a working environment where we can all create an environment to support the work of making the world more accessible.

olympiamarra — 2023-11-22 01:26:10 UTC

This resource considers barriers that people with physical disabilities face regarding learning and accessing education. They discuss physical barriers such as not being physically able to access your classroom or navigate the building/ campus due to a lack of accommodations. They also discuss societal barriers such as teachers not recognizing a disabled student’s potential because they only see their disability, which leads to a lack of opportunities given to the student. This is also an amazing resource that provides a list of common characteristics of a student with a disability as well as suggested strength-based accommodations/ classroom adaptations to accompany each.

olympiamarra — 2023-11-22 01:27:15 UTC

In this heartwarming video, Joe Basey and Xavier Chenault consider barriers they face as disabled people relating to their education and employment. Joe is a recreation instructor for the city of Eugene, WA, and he also discusses the progress he’s seeing in overcoming these barriers, working towards an inclusive city with equal opportunities to lead full, healthy lives for everyone.

olympiamarra — 2023-11-22 01:27:51 UTC

This page discusses accessible education and offers many inclusive teaching strategies to ensure meaningful learning for everyone. They provide tips for supporting someone with a physical disability in many different environments and scenarios, as well as suggestions for one-on-one interaction with a student with a disability. This page also has suggestions for some common academic adaptations and modifications that can help accommodate students with physical disabilities.

olympiamarra — 2023-11-22 01:28:43 UTC

This article discusses the importance of mobility and participation in children and youth with disabilities. It also reiterates the importance of not only reducing physical barriers in the world but also reducing ableist social environments. In this article, they consider that since mobility enables access to social, economic, and community life, young people with disabilities are often excluded from everyday activities that promote a sense of identity and belonging. They state that fundamental change is needed in the systems surrounding us to move toward an inclusive society that supports people with disabilities to access the same opportunities as everyone else.

olympiamarra — 2023-11-22 01:29:15 UTC

This article discusses all the types of barriers that people with physical disabilities often face on a daily basis. Some of the most common barriers discussed are attitudinal physical, programmatic, social, or related to transportation, communication, or policies. This article goes into detail about each of these types of barriers, providing examples and specifying what is difficult about certain situations for people with physical disabilities.

Citation

olympiamarra — 2023-11-22 01:31:28 UTC

Centers for Disease Control and Prevention. (2020, September 16). Common Barriers to Participation Experienced by People with Disabilities. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html

Ontario’s Universities. (2017, February 27). Teaching students with physical disabilities. Accessible Campus. https://accessiblecampus.ca/tools-resources/educators-tool-kit/teaching-tips/teaching-students-with-physical-disabilities/

Place Matters Oregon. (2021, June 3). Overcoming job barriers for people with disabilities [video]. Youtube.https://www.youtube.com/watch?v=IpIfZJ6lkpE

Smith, M., Calder-Dawe, O., Caroll, P., & Witten, K. (2021, February 6). Mobility barriers and enablers and their implications for the wellbeing of disabled children and Young People in Aotearoa New Zealand: A cross-sectional qualitative study. Wellbeing, Space and Society. https://www.sciencedirect.com/science/article/pii/S2666558121000014

Supporting Students with Disabilities. (n.d.). Physical Disabilities: Implications for Learning. https://alc.ext.unb.ca/modules/physical-disabilities/implications-for-learning.html

Citation

2023-11-22 08:06:29 UTC

Biogen. (2023, March 2). Tristram’s story: Living with Spinal Muscular Atrophy. Www.youtube.com. https://www.youtube.com/watch?v=eSPWxB8lUrQ
CDC. (2016, March 23). Living with Cerebral Palsy: The Gandee Family Story | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/cp/features/living-with-cp-gandee-family.html
CDC. (2019a, September 9). Real Stories from People Living with a Disability | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/stories.html#nickole
CDC. (2020, September 22). Real Stories: Living with Spina Bifida | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/birthdefects/stories/spina-bifida/nikia.html
Philadelphia, T. C. H. of. (2023, April 13). Siena’s Story: Fetal Surgery for Myelomeningocele. Www.chop.edu. https://www.chop.edu/stories/sienas-story-fetal-surgery-myelomeningocele
The Children's Hospital of Philadelphia. (2015). Ciarlo’s Spina Bifida Story: Look at Him Now. In YouTube. https://www.youtube.com/watch?v=yqT5fw_Ci4c
EA's
Children’s Health , N. (2023, September 3). Muscular Dystrophy Factsheet (for Schools) (for Parents) - Nemours KidsHealth. Kidshealth.org. https://kidshealth.org/en/parents/md-factsheet.html#:~:text=Make%20sure%20your%20classroom%20is

Muscular Dystrophy: knowledge for schools

2023-11-22 08:08:14 UTC

Student may need…

Indiviidualized eduction plan (IEP) or 504 education plan
Need adaptive or assistive technological devices in teh classroom (such as a keyboard for writing or assistance)
Wear braces, use crutches or a walker, or need a wheelchair
Need extra time to get physical therapy sessions and medical visits
Need tutoring or support
Need extra time to make assignments adn take tests
Need preferential seating
Be at risk for bullying

What teachers can do…

Makign sure the classroom is easy access to get around and no obstacles
Encourgae classmates to be supportive and help when needed
Encourage classmates to paractive in activities at the students own pace and comfort level
Physcial activities that should be adapted to the student’s ability

Citation

boyesh23_ — 2023-11-22 09:25:15 UTC

Opšenák, R., Richterová, R., & Kolarovszki, B. (2021). Etiology and pathophysiology of the spina bifida. In IntechOpen eBooks.Etiology and Pathophysiology of the Spina Bifida | IntechOpen

2. What is Cerebral Palsy? | CDC. (2023, October 6). Centers for Disease Control and Prevention.

What is Cerebral Palsy? | CDC

3. Spina Bifida. (n.d.). National Institute of Neurological Disorders and Stroke. Retrieved November 20, 2023,

Spina Bifida | National Institute of Neurological Disorders and Stroke (nih.gov)

4. Professional, C. C. M. (n.d.). Muscular Dystrophy. Cleveland Clinic. Retrieved November 20, 2023,

Muscular Dystrophy: What It Is, Symptoms, Types & Treatment (clevelandclinic.org)