Speech Therapy: Vital To Opening a Child’s World

By Lee Vander LoopCP Family Network Editor

Years ago, before the invention of augmentive communication devices, children who displayed an inability to communicate were assumed to suffer from severe developmental disabilities and treated as such.

Imagine the heartache and frustration of a child with sound cognitive abilities or mild to moderate learning disabilities trapped in their body as a result of their inability to communicate. Augmentive communication devices have opened doors and given new lives to many individuals, providing a means of speech communication for those who would otherwise have no means of expressing themselves and their needs. Thankfully, speech therapists and augmentive devices are common today and can help most any child communicate in some way with the world around him or her.

The Basics of Speech Therapy

Speech therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.

Many children with cerebral palsy experience some level of challenge with speech. Their challenges could be due to cognitive delays as in the case of mental retardation and learning disorders, or may be the result of damage to the area of the brain that facilitates speech. The speech center of the brain is referred to as the Broca’s area and is located in the left side of the brain for right-handed and most left-handed people. Nerves from the Broca’s area lead to the neck and face and control movements of the tongue, lips, and jaw.

Children learn speech from parroting what they hear in their environment. Children with hearing disabilities also experience challenges with speech because they cannot clearly hear sounds they and those around them are making. Children with cerebral palsy and speech challenges also commonly suffer from feeding disorders. Therapy to strengthen speech muscles also greatly benefits eating and swallowing.

Issues Involving Specific Types of Diagnosis

With children diagnosed with spastic cerebral palsy, muscle tightness (hypertonia) may cause the tongue to constantly push up against the roof of the mouth, or palate, making speech all but impossible. Children diagnosed with hypotonia (low muscle tone) likewise would experience challenges with speech, since the muscles of the mouth and tongue work together to form sounds.

The tongue is the primary organ involved in speech. It is also the primary organ of taste, chewing and swallowing. In chewing, the tongue holds the food against the teeth; in swallowing, it moves the food back into the pharynx, and then into the esophagus when the pressure of the tongue closes the opening of the trachea, or windpipe. It also acts, together with the lips, teeth, and hard palate, to form word sounds. Early intervention in this area is vital to a child’s development.

What to Expect From Your Child’s Therapy/Therapist

Communication-Your child’s physical or speech therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen. In the case of oral motor and swallowing skills, your child’s therapist should take every precaution to minimize the risk of choking and aspirating.

You should also expect the therapist to communicate with your child. Most young children are anxious and fearful with strangers. The therapist should be working and communicating with your child to win your child’s trust and confidence. Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an OBJECT and not a human being, FIND ANOTHER THERAPIST!

Teaching-Your child’s therapist is not only working with your child, but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals.

Questions to Ask:

• Communication works both ways. You should be communicating any concerns and questions you have to the therapist. If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions.

• Ask the therapist what you can do between therapy sessions to help your child maintain their progress.

• Ask how often you should work with your child and the duration of each session.

• If your child has been prescribed adaptive or augmentive equipment, inquire as to how often you should use the equipment and the duration of each session.

Compassion and Patience-You have the right to expect compassion and patience from your child’s therapist. If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM. Effective therapy should not be traumatizing. This is contradictive and will result in your child relating therapy to pain.

Accountability-Your child’s therapist should have written goals. You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing. The therapist should do periodic assessments and provide you with goals for improvement and notify you of progress or regression on a regular basis.

Coordination-You have the right to expect your child’s therapist to work with your child’s educators in developing your child’s Individual Education Program (IEP) and to be an active member of your child’s IEP team. In the case of a private physical therapist not associated with your child’s school, he or she should be communicating with your child’s teachers and involved in the IEP process to make sure everyone is working toward the same goals.

The therapist should also be coordinating and communicating with your primary care doctor about any needed adaptive equipment or communication devices, and should keep the doctor informed of your child’s progress or problems. If the therapist feels your child would benefit from a specific communication device or piece of adaptive equipment, it is their responsibility to communicate the need to the physician and to follow-up in obtaining the device.

Continuity of Care-You have the right to demand continuity of care for your child. This means that the same therapist works with and follows your child throughout the therapy process. Of course, this isn’t always possible, but it should be the goal of any agency you work for. If your therapist belongs to a group or agency and they are sending a different therapist with each session, find another agency. This is not acceptable.

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References

Scienceclarified.com

National Speech/Language Therapy Center

Health Science

Teen With Cerebral Palsy Bridges Gap For Those With Disabilities

November 1, 2012
By Lissa Blake

Imagine having to play charades all day in order to get others to understand you.

That’s what life is like for Lydia Dawley, a sophomore at Decorah High School who suffers from cerebral palsy.


“It’s very frustrating,” said Dawley.

But although Dawley is confined to a wheelchair, she doesn’t let it get her down – or even slow her down. Dawley is becoming an outspoken advocate for persons with disabilities, presenting to college classes, at political forums, symposiums and conventions.

“Making your voice heard is only one part. The wheelchair doesn’t define me. It means you have to do things differently, not that you can’t do things,” she said.

Dawley recently returned from a trip to Des Moines, where she was a special guest at the Midwest Association for Medical Equipment Suppliers (MAMES).

Dawley, who dreams of someday being a lead advocate for persons with disabilities, said she enjoyed having the chance to meet Congressman Tom Latham.

“I feel so honored … I was so interested in listening to what he was saying and learning so much more about government and what I can do to help make a difference for others. I have already started writing some letters,” she said.

While Lydia is non-verbal, she is still cognitively on target. She is able to “speak” through an augmentive communication device which is attached to her wheelchair. The apparatus, available through Talk to Me Technology, works two ways: first, there is a camera attached to the screen. It zones in on the pupil of her eye, which she can then use to point to letters on a keyboard. Second, she has a Blue Tooth attachment on her wheelchair joystick.

“What is so cool about this is it sends a light to the pupil of my eye. Without this, I wouldn’t have the opportunity to speak in class or communicate with my friends,” said Lydia.

While this method of communication is relatively time-consuming, she has some preprogrammed phrases that help her on a daily basis. When preparing a lengthy speech like the one she gave at MAMES, she develops the text ahead of time, and is then able to play her speech, which sounds like a computerized female voice.

“She has a business card that says ‘A teenager with a voice! Trying to close the gap,’” said her mother, Jacque.

In the speech she typically gives, Lydia explains how she was born with her umbilical chord wrapped twice around her neck.

“I wasn’t breathing and was brought back to life. So now you can tell people you met a dead person,” quips Lydia.

She explains that cerebral palsy is a non-progressive, non-curable disease that she will have all her life. It results in a group of chronic conditions which inhibit her body movements and muscle coordination.

She credits her amazing drive and motivation to the support of her parents, Nathan and Jacque Dawley, of Bluffton.

“When I was 18 months old, a doctor tried to tell my parents they needed to accept that I was disabled. My dad picked me up and walked out of the room. Lucky for me, my parents have always listened to their gut feeling. They’ve always given me a chance,” she said.

“If my parents had listened to that doctor that day, I wouldn’t be here today to talk to you. People believing in me gives me the feeling there’s nothing I can’t do,” she said.


Early support:

Dawley said because she is non-verbal, she had to learn to read at a very young age to be able to communicate.

“My preschool teacher, Beth Crawford, told my parents, “There is something in this girl’s head,” said Lydia.

“I learned early on to communicate in nontraditional ways, to make friends, to get along in life. Interestingly enough, I witnessed some amazing changes in other students. They realized that if a person who can’t walk can do the things I was doing, everyone is capable if you believe in them.”


No limits:

Dawley is active in 4-H and shows goats, sheep, horses and her dog at the fair. She also gave her prepared advocacy speech through a communication competition in 4-H.

At school, she recently participated in speech competition. Her instructor, Amanda Huinker, helped pave the way for her to utilize her assistive technology device to excel at district competition, after which she moved on to state, receiving No. 1 ratings from all the judges.

Huinker said she really enjoyed working with Lydia on her speech.

“The process of working with Lydia was such a positive one; I too grew from the experience. She is an amazingly sweet girl who wants to make her mark on the world just like everyone else, and she most definitely does have the power to make a difference through her words; the fact that her words come through the voice of a computer doesn’t change the powerful message behind them – perhaps it even strengthens it,” said Huinker.

In her spare time, Lydia works with families of children with disabilities at Team Rehab in Decorah. In 2001, the Dawleys traveled to Poland with therapist Lisa Krieg to learn about Therasuit therapy, which is now available to patients in Decorah.

“Lydia talks to a lot of the patients who go there as an inspiration for the patient and their parents, of how not to let obstacles get in your way. They see what an inspiration Lydia is. How life doesn’t have to stop because they have a disability,” said Jacque, who added she is willing to help families get in touch with the companies who offer the assistive technology her daughter uses.


So proud:

Jacque said she and Nathan are so proud of Lydia and how she has become such a strong advocate.

She credits much of Lydia’s success to the Decorah School System.

“They were wonderful, helping us figure out how Lydia’s school days can go, how to help her do the work. They know she’s capable. Like Beth Crawford said: she gets it and you need to not let her stop,” she said.

“I feel very fortunate to live in this District and to have this school system behind us. Many other students we meet from other districts and other states don’t always have that support. Decorah is advanced in their thinking and in their technology and in their willingness to put the students’ needs first,” said Jacque.


What’s next?

Lydia has been asked to attend several upcoming technology lobbying events.

She said after graduation, she hopes to go to college at the University of Northern Iowa or in Washington, DC in order to work in speech pathology or get into government.

“With a supportive family, therapy and assistive technology, people with cerebral palsy can lead productive lives … If given the right tools, they can offer so much to society. I hope you will take time in your life to realize that everyone is capable. Everyone has a voice,” she said.

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Cerebral Palsy: Developmental Milestones Birth to 12 Months

By Lee Vander LoopCP Family Network Editor
Many children with cerebral palsy are diagnosed shortly after birth. Others, however, may go months or even years with no diagnosis. Without a diagnosis, valuable early therapies and treatments are delayed.
How is a parent struggling with the question “is my child developing normally?” supposed to tell? If you are concerned, you should not hesitate to talk to your doctor. Trust your hunches. According to research, parental concerns detect 70% – 80% of all disabilities in children. So if your gut is telling you something is not right, chances are, it’s not.
Meanwhile, there are guidelines known as “developmental milestones” to help parents determine whether or not their child is keeping up with his or her peers. These milestones are a set of functional skills or age-specific tasks that most children can do at a certain age range. For children who have suffered a brain injury at birth, however, these guidelines often don’t apply. Depending on the severity and location of the brain injury, some children experiencing developmental delays may be able to achieve milestones only through a variety of therapy and interventions. Others with severe brain injuries may never achieve some developmental milestones.

Signs of Cerebral Palsy in Infants Up to 12 Months

The signs of cerebral palsy vary greatly because there are many different types and levels of disability, but an early indication is a delay in controlling movement of the head or arms and legs. This list of cerebral palsy symptoms, divided by age range, is not comprehensive but serves as a good starting point to determine if your child may have developmental delays. If you see any of these signs, call your child’s doctor or nurse.

• 2 months and older:
  • Have difficulty controlling his head when picked up
  • Have stiff or shaky arms or legs
  • Have stiff legs that cross or “scissor” when picked up
  • Have oral motor difficulties and problems sucking and feeding
• 6 months and older:
  • Continue to exhibit poor head control when picked up
  • May reach with only one hand while keeping the other in a fist
  • Have problems eating and drinking
  • May not roll over without assistance
  • May not be able to push up with their hands when laying on their stomach
• 10 months and older:
  • Crawl by pushing off with one hand and leg while dragging the opposite hand and leg
  • Not be able to sit by himself or herself
• 12 months and older:
  • Not yet crawl or attempt to pull themselves up
  • Not be able to stand with support

Basic Developmental Skills

Cerebral palsy is caused by a problem in the brain that affects a child’s ability to control his or her muscles. Problems in different parts of the brain cause problems in different parts of the body. There are many possible causes of problems, such as genetic conditions, problems with the blood supply to the brain before birth, infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury. A child who lacks basic motor skills will have difficulty reaching subsequent milestones without help.
The Interdisciplinary Council on Developmental and Learning Disorders Outlines the six basic developmental skills which lay the foundation for all learning and development. Although all children develop at their own rate, growth can be defined in the following areas:

• Gross Motor – Gross motor enables your baby to achieve major milestones such as head control, sitting, crawling, maybe even starting to walk. Children exhibiting a delay in gross motor skills need to be evaluated as early as possible so they can start getting physical therapy to help them strengthen their muscles.
• Fine Motor – These skills allow a child to hold a spoon, or pick up a piece of cereal between thumb and finger. Children exhibiting delays in these skills will have difficulty holding a spoon, manipulating small objects or grasping items between their thumb and fingers.
• Sensory – Sensory skills include seeing, hearing, tasting, touching and smelling.
  A child with a brain injury may have trouble processing information from these senses, a condition known as Sensory Processing Disorder. Normally diagnosed by developmental pediatricians, pediatric neurologists and child psychologists, children experiencing difficulties with sensory processing may exhibit either a “hyper” (over) or “hypo” (under) sensitivity to stimulation of the senses.
An infant with hypersensitivity may:

• Dislike being touched or dressed
• Seem intolerant of normal lighting in a room
• Startle easily at small sounds
An infant with hyposensitivity, may:

• Seem restless and seek stimulation
• Not startle or respond to loud noises
• Language – A child with cerebral palsy may lack the muscle strength in the mouth and tongue to control sounds or may have trouble hearing or processing sound, all of which will delay language. An infant developing normally from birth to 5 months will react to loud sounds, turn her head toward a sound source, watch your face when you speak, make pleasure and displeasure sounds (laugh, giggle, cry, or fuss), and make noise when talked to. Other milestones are listed by the National Institute on Deafness and other Communication Disorders.
• Social and Emotional– Social and emotional milestones are often harder to pinpoint than signs of physical development. A child from birth to 12 months who has trouble processing sensory input or who has poor control of movement because of a brain injury may be delayed in:
  
  • Crying to express distress or to attract attention
  • Fixating on faces
  • Smiling purposefully at certain people (mom, for example)
  • Cooing or laughing to attract attention
  • Playing “peek-a-book” or other game
  • Responding to their own names
  • Developing stranger anxiety
  A full list of both social and emotional milestones is listed here.

An Important Note about Developmental Milestones

Developmental milestones are only guidelines. No two babies are alike and no two develop the same, though most reach certain milestones at similar ages. Every child develops at their own rate. If your child was born prematurely, you will need to look at the guidelines a little differently. Also, all human development depends on environmental stimulation. A child deprived of a loving, nurturing and stimulating environment will experience developmental delays.
Your baby’s physician will evaluate your child’s development at each well-baby visit. Don’t be surprised if the pediatrician tells you not to worry, to be patient, to give your child more time to develop. Often, that’s what parents hear, especially in the early stages of investigating their child’s apparent delays. And it’s often true. Children develop at different rates; the pediatrician is well aware that many children show sudden bursts in development rather than slow, steady growth.
On the other hand, your pediatrician may recommend that a developmental screening be conducted. Its purpose is to see if your child is experiencing a developmental delay. The screening is a quick, general measure of your child’s skills and development. It’s not detailed enough to make a diagnosis, but it will show whether a child should be referred for a more in-depth developmental evaluation.

Resources

You can find a wonderful interactive Milestone Checklist at the CDC, provided by the National Center on Birth Defects and Developmental Disabilities. It details specific developmental accomplishments and allows sharing of forms with other caregivers for their input. http://www.cdc.gov/ncbddd/actearly/milestones/index.html
The American Academy of Pediatrics offers a Parenting website, healthychildren.org: Ages & Stages:
http://www.healthychildren.org/English/ages-stages/baby/pages/Developmental-Milestones-1-Month.aspx
National Library of Medicine, National Institute of Health, Medline Plus, Infant and Newborn development
http://www.nlm.nih.gov/medlineplus/infantandnewborndevelopment.html
March of Dimes, Your Growing Baby
http://www.marchofdimes.com/baby/growing_indepth.html
Center for Disease Control and Prevention, CDC, Child Development
http://www.cdc.gov/ncbddd/child/

Airline iPad Policy Sparks Disability Dispute

August 22, 2012
From MICHELLE DIAMENT

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American Airlines is taking heat for requiring a teen who is nonverbal to stow the iPad she relies on to communicate during a recent flight.

Carly Fleischmann, a 17-year-old with autism from Toronto, lambasted American Airlines on her Facebook page earlier this week for limiting access to the iPad she uses to speak.

On her way home from Los Angeles last Friday, Fleischmann said that a flight attendant told her to put away the tablet for takeoff and landing and was unwilling to bend even after Fleischmann’s aide explained that it was a communication device.

“She stated to me that it was the policy of the airlines that I couldn’t have my iPad and that with all her years of flying that she’s never seen or heard anybody using an iPad to communicate before,” wrote Fleischmann, who said that her communication needs have always been accommodated by the crew on previous flights.

“My iPad to me is like a voice. Can you imagine being on the airplane and (being) asked not to talk for over 25 minutes,” she wrote, adding that she was ultimately allowed to keep her iPad out after the captain of the plane intervened but the device had to be placed “in front of my seat out of my reach.”

Fleischmann, whose intellectual capabilities went unknown until age 11 when she began to type, is well-known with her story having been featured on ABC News, CNN and “The Ellen DeGeneres Show,” among others. She has a strong social media presence with over 42,000 fans on Facebook and some 26,000 Twitter followers and they were quick to respond, flooding American Airlines’ Facebook page to demand answers.

Airline officials responded directly to many of the postings indicating that they have reached out to Fleischmann privately, but that the flight attendant acted in compliance with the airline’s policy and federal rules.

“Our flight attendants are responsible for following U.S. Department of Transportation regulations on the accommodation of customers with disabilities,” airline spokesman Ed Martelle said in a statement to Disability Scoop. “American’s electronic device policy is designed to be in full compliance with the DOT. Likewise, federal safety rules require the stowage of personal items during takeoff and landing and prohibit the use of electronic devices at the same periods. We regret any discomfort Carly felt or difficulty this may cause customers.”

Federal rules and American Airlines’ policy on the use of electronics make exceptions for certain medical devices including hearing aids and pacemakers but do not specifically mention assistive and augmentative communication devices.

Late Wednesday, Fleischmann said she was working to get a meeting with representatives of American Airlines and the Federal Aviation Administration to discuss the matter.

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