Occupational Therapy Archives - West Texas Rehab

Down Syndrome Explained: Rocking an Extra Chromosome

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. Instead of the typical 46 chromosomes, people with Down syndrome have 47 chromosomes. Having an extra chromosome changes brain and body development resulting in physical and cognitive differences. 

There are three different types of Down syndrome

  1. Trisomy 21 is the most common and accounts for 95% of the cases. It is caused by an extra copy of chromosome 21. 
  2. Mosaic is when there is a mixture of cells with the normal 46 chromosomes and those with 47 that have an extra chromosome 21. 
  3. Translocation is when there are the normal 46 chromosomes but then an extra copy of chromosome 21 attaches to another chromosome; usually chromosome 14.

 

Common characteristics: 

While characteristics vary from person to person, these are some of the most common:

Physical Features Cognitive/Social Features Developmental Delays
  • A flattened face, especially the bridge of the nose
  • Almond-shaped eyes that slant up
  • A short neck, fingers, and toes
  • Small ears
  • Short attention span
  • Poor judgment
  • Impulsive behavior
  • Slower learning
  • Delayed language and speech development
  • Gross motor skills
  • Fine motor skills
  • Speech and language skills

Myths vs. Facts

Myths  Facts 
Down syndrome is a rare disorder. 

Most children with Down syndrome are born to older parents.

All children with Down syndrome have a severe cognitive disability.

People with Down syndrome cannot be active members of society.

It is the most commonly occurring chromosomal condition. Approximately 1 out of 772 babies in the United States are born with Down syndrome.

More children with Down syndrome are born to parents younger than 35 but the likelihood of having a baby with Down syndrome increases with age. 

Most people with Down syndrome have a mild to moderate cognitive or intellectual disability.

People with Down syndrome participate in a wide range of activities in their communities.  

 

What can I do to help? 

Talk to your child’s pediatrician about services, equipment, and community resources in your area for support as they learn new skills.  Examples that may be appropriate:

 

Healthcare Equipment/Devices Community Resources
  • Medical Specialists
    • Pediatrics, Orthopedics, Neurology, Genetics, and others as appropriate
  • ECI (Early Childhood Intervention, 0-3 years)
  • Pediatric Outpatient 
    • Physical therapy, occupational therapy, and speech therapy
  • AAC (Augmented/Alternative Communication)
  • DME (Durable Medical Equipment)
    • Orthotics
    • Standing frame
    • Gait trainer
    • Walker 
  • Daycare settings for children with special needs
  • School-based therapy and accommodations
  • Adaptive Sports (Challenger League, etc.)
  • Upside Down Club of Abilene (or local chapter in your area)
    • Annual Buddy Walk event

 

Organizations and Websites that offer Support 

This website has resources and programs; education for parents as educators; supports for advocacy; an annual convention; and Down syndrome news stories and events. Each state also has various links to help at the state level. 

This website has resources and support by age and by topic. It also has help with advocacy and policy. 

This website offers resources, programs, research, and events specific to individuals with mosaic Down syndrome

This website offers resources and support, events, and even a shop for Down syndrome awareness 

This website has programs and resources for people with down syndrome and their families. These resources/programs include apps, a magazine, workshops, and podcasts. These resources are also available in Spanish. 

This website was created to help people with intellectual disabilities with advocacy and policy and helps to connect families with local agencies that can help with these areas. 

This website offers information about research and medical care; offers programs and events; advocacy; and news about people with Down syndrome. The foundation helps to fund the  Linda Crnic Institute for Down Syndrome which is committed to research and medical care for people with Down syndrome. 

This website offers resources, events, and personal stories for families in the Big Country area.

To learn more about all of the services we provide, click here.

Oral Motor Approach to Feeding and Speech

Oral Motor function and skill is something you may hear your Speech-Language Pathologist talk about in reference to your child’s speech and feeding therapy. What does Oral Motor mean anyway? Oral motor refers to the movement patterns and muscles of the mouth. So it makes sense that Oral Motor function and skill are important for speech and eating. Therefore, when we look at speech and feeding delays through the lens of oral motor functioning, we are able to more specifically identify and serve those patients whose speech and feeding skill delays are a result of an oral motor function deficit.

Oral motor function impacts five major areas:

  1. Awareness of pressure and movement – The body’s automatic response to sensory input i.e.(trigger of swallow or cough to protect the airway)
  2. Control of Secretions – swallowing saliva, adequate lip closure to prevent drooling
  3. Coordination for eating, drinking, talking, and facial expressions- just like we need coordination to walk and ride a bike, we need motor coordination to eat and drink a variety of consistencies safely and efficiently, and to coordinate speech movements along with breathe.
  4. Knowledge of the environment-sensory receptors (taste and touch) give information about objects within the environment i.e.( when babies mouth and chew to find out more about things around them)
  5. Control of movements for talking – early developing sounds require slower, larger movements for cooing (vowels) and as development progresses and muscle skills improve new sounds emerge with the vowel sounds i.e. babbling (bababa, mamama). Once coordination increases sound combinations become more complex i.e. (first words -> phrases -> sentences).

All of these areas are vital in the development of normal speech and feeding abilities. If there is significant weakness or deficit in oral motor function, feeding and speech development may be delayed or disordered for a child’s age i.e. (problems with drooling, tongue thrust, gagging, poor suck, poor eating, poor food texture grading, limited food preferences, and poor speech production).

What’s the next step? A Speech-Language Pathologist will do a comprehensive evaluation to look at all areas of speech, language, and/or feeding abilities. As a part of this evaluation, the SLP will determine if oral motor assessment is indicated. If oral motor assessment is warranted, the SLP will measure your child’s oral motor function and determine if oral motor intervention is indicated as an appropriate approach for speech or feeding therapy sessions.

Don’t we need to work on actual speech or eating tasks to improve these areas?

YES, in order to improve/develop adequate speech and/or feeding skills, the main target of therapy will be to practice speaking and/or eating. However, there is more than one way to build muscle strength, control, and coordination. Just like there are many different exercises to increase core strength i.e. (crunches, sit ups, plank). If we incorporate a variety of different ways to work and provide input to the muscles used for speech and feeding, the greater the functional strength and coordination outcome.

Will Oral motor intervention magically produce speech or increased feeding skills?

Not on it’s own. However, when paired with targeted speech or feeding intervention tasks, oral motor exercises can increase awareness and sensory input to the muscles which impact muscle activation, planning, programming, and execution. We need all of these components for everyday speech and feeding tasks.  To find out more information contact our Speech Therapy department in San Angelo or Abilene.  https://westtexasrehab.org/services/

References:

Beckman, D. A. (1986 Rev. 2007) Beckman Oral motor Assessment and Intervention.

Published by Beckman & Associates, Inc.

620 N Wymore Rd STE 230, Maitland, Florida 32751-4253.

www.beckmanoralmotor.com

Written by:

Kalee Rupe M.S. CCC-SLP

Lymphedema Treatment Act passed by Congress in 2023 goes into effect January 1, 2024

FOR IMMEDIATE RELEASE

Contact: Heather Ferguson

Heather@LymphedemaTreatmentAct.org

704-965-0620

 

Health Provision Passed by Congress will Help Millions Who Suffer From this Under-Recognized Chronic Disease: Cancer survivors and others with lymphedema applaud inclusion of the Lymphedema Treatment Act in the Consolidated Appropriations Act of 2023

For 12 years, the all-volunteer Lymphedema Advocacy Group led a grassroots campaign to close the unintended gap in Medicare coverage that prevented the program from covering prescribed medical compression garments that are the cornerstone of treatment for lymphedema.

“My son who was born with lymphedema was prescribed his first compression garment when he was seven months old,” said Heather Ferguson, the Founder and Executive Director of the group. “Our insurance company denied it because they aligned their coverage with Medicare.”

An estimated 3-5 million Americans suffer from lymphedema, a disease that causes painful and potentially life-threatening buildup of lymphatic fluid in the body. About two-thirds of patients acquire the condition due to damage done to their lymphatic system during cancer treatment, but there are also many other causes of lymphedema, including congenital malformations.

During each of the last three Congresses the Lymphedema Treatment Act had tremendous bipartisan support, with over 400 House and Senate cosponsors. As Congress concluded their work in 2022 the bill was included in the year-end omnibus spending package, creating a new Medicare Part B benefit category for lymphedema compression supplies.

“I am proud that the Lymphedema Treatment Act, which I have worked on for many years, was included in this package. Lymphedema is not a choice. Access to care should not be either,” said Congresswoman Jan Schakowsky (D-IL-9), who sponsored the bill in the House.

“Lymphedema patients have been denied this coverage for far too long. After battling cancer, survivors can be met with this equally debilitating diagnosis, but with far fewer resources in place to assist them,” said Congressman Buddy Carter (R-GA-1), who co-led the House bill. “As a pharmacist and a child of a cancer survivor, I’ve seen the pain that lymphedema can cause. To those patients – help is on the way.”

“Lymphedema affects more than 8,000 Medicare beneficiaries in Washington state and millions of Americans. By updating Medicare, we’re reflecting necessary and effective treatments for this condition,” said Senator Cantwell (D-WA), who sponsored the bill in the Senate. “This new law is a commonsense approach to improving care for Medicare beneficiaries living with lymphedema while reducing costly hospitalizations.”

The Senate bill was co-led by Senator Chuck Grassley (R-IA). According to multiple studies and real-world data, the use of medical compression garments has been proven to significantly reduce lymphedema-related infections and other complications, and an independent analysis by Avalere concluded that improved access to these doctor prescribed supplies would save Medicare hundreds of millions of dollars annually through avoided hospitalizations.

“As an SSDI and Medicare beneficiary I have experienced more frequent infections since being on Medicare and not having coverage for my compression garments,” said Sarah Bramblette, Board Chair of the Lymphedema Advocacy Group. “Being able to better manage this chronic disease will greatly improve my health and quality of life.”

Patient advocates and stakeholder groups will now work with the Centers for Medicare and Medicaid services as they implement the new coverage, which will go into effect January 1, 2024. The Lymphedema Advocacy Group plans to celebrate passage of the bill and announce next steps at an upcoming event in Washington, DC, which may occur in March, during Lymphedema Awareness Month. Advocates interested in more information can go to LymphedemaTreatmentAct.org.

May is Stroke Awareness Month

May is Stroke Awareness Month, a time dedicated to increasing awareness about stroke, its causes, and its impact on individuals and families. Stroke is a leading cause of death and disability worldwide, and it is important to understand its warning signs and risk factors.

A stroke occurs when blood flow to the brain is disrupted, either due to a clot blocking a blood vessel (ischemic stroke) or due to bleeding in the brain (hemorrhagic stroke). When the brain is deprived of blood and oxygen, brain cells start to die within minutes. This can lead to permanent brain damage, disability, or even death.

According to the American Stroke Association, someone in the United States has a stroke every 40 seconds, and someone dies from a stroke every four minutes. In addition, stroke is a leading cause of serious long-term disability, with more than 6.5 million stroke survivors currently living in the U.S.

While stroke can affect anyone, certain risk factors increase the likelihood of having a stroke. These include high blood pressure, smoking, diabetes, high cholesterol, obesity, and a family history of stroke. People who have had a previous stroke or transient ischemic attack (TIA, or “mini-stroke”) are also at higher risk.

Recognizing the warning signs of stroke is crucial for getting prompt medical attention and preventing long-term damage. The acronym “FAST” is an easy way to remember the signs of stroke:

  • Face drooping: Does one side of the face droop or feel numb?
  • Arm weakness: Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?
  • Speech difficulty: Is speech slurred or hard to understand? Ask the person to repeat a simple sentence, like “The sky is blue.”
  • Time to call 911: If someone shows any of these symptoms, call 911 immediately.

Getting to a hospital quickly can make a big difference in a stroke patient’s outcome. Certain treatments, like clot-busting drugs or mechanical thrombectomy, are time-sensitive and can only be given within a few hours of the onset of symptoms.

Stroke Awareness Month is an opportunity to spread the word about stroke prevention, recognition, and treatment. By raising awareness, we can help more people understand the risk factors, warning signs, and actions to take in the event of a stroke. This knowledge can ultimately save lives and improve outcomes for stroke survivors.

Source: https://thestrokefoundation.org/stroke-awareness-month/

Sensory Defensiveness and Anxiety

Usually when you think of sensory defensiveness we do not think of anxiety as a part of “sensory issues”. However, many times when children have difficulties with sensory modulation disorders, they will also have anxiety due to either over responding to sensory input.

When sensory integration is working…

A child can attend to tasks

Change routines without stress

Can tolerate touch, sounds and can listen

Tolerate transitions in activities

Tolerate most textures with feeding and touch

Tolerate movements

Tolerates most visual input as well as auditory

Can play, and vary types and intensities of sensory experiences.

Have the ability to conceptualize, organize, and execute non-habitual motor tasks (praxis)

Children with sensory modulation disorder may demonstrate behaviors appearing “over-responsive” or have a low threshold (takes little sensory input to set them off. Winnie Donn, Ph.D.,OTR, FAOTA). “These children can be fearful of movements, defensive to touch, certain textures, have feeding problems or be sensitive to sounds.  They appear to have anxiety, and can often have behavioral outcomes.

When a child is “under-responsive” or has a high threshold, it takes a lot of sensory input to achieve the ‘just right’ threshold.  These are the children that seek out sensory input, such as running, crashing, jumping, or have lack of attending.  They have a decreased awareness of tactile or auditory input (such as calling their name). These children can also have difficulties with emotional/behavioral regulation.  Some children can fluctuate between the two extremes.  Dunn, Winnie, 1999, The Psychological Corporation.

As a therapist working with toddlers or older children, learning strategies to deal with the sensory issues as well as the anxiety is paramount. Sometimes the anxiety can manifest into sensory issues.

Toddlers:

With toddlers there can be a wide array of sensory issues that can set them off.  I usually have parents start out by filling out the “Sensory Profile”, then as a therapist I want to know their likes and dislikes and will have the parents give a list of both. Again, working closely with parents so they may be successful at home, daycare, church or any environment that was challenging for the child.

I start out with a plan of heavy work activities that is suited for the child. Heavy work  is any type of activity that pushes or pulls against the body. Heavy work activities can help kids with sensory processing issues feel centered. Heavy work engages a sense called proprioception, or body awareness.  I also encourage parents to start working on this at home.

For Older children:

Again, we get them involved with heavy work as this is generally calming to most children in a high or escalated state.

We also work on self -awareness of the level of anxiety using charts (see below).  On this particular chart the levels are 1-5 with 1 being happy and 5 being “I feel Anxious!” or “I feel like hurting myself.”  We recognize some anxiety is healthy, however when it interferes with daily activities such as school work, relationships, performance in daily tasks at home it is no longer healthy.  I have children look at the chart 5 times throughout the day and read their levels, if they are getting to a level 3, 4, they need to address the anxiety before it gets out of control by performing heavy work activities, or favorite activities to calm them down.