Girl with Cerebral Palsy reading.

Picture Exchange Communication System (PECS)

Picture Exchange Communication System (PECS) was created in 1985 for young children with Autism. Over the years it is now being introduced to most children who are non verbal.

This is quite interesting how it is taught.

Phase I teaches the physical exchange of a picture; no discrimination is required.

Phase II teaches distance and persistence.

Phase III: Picture discrimination skills are introduced: first through pairings of preferred and non-preferred pictures.

Phase IV: Sentence structure is introduced: the simple request will now consist of the sentence starter “I want” + a picture of the desired item/activity placed on a Sentence Strip.

In Phase V, the PECS user is taught to expand on basic skills with the addition of attributes.

In Phase VI, individuals learn to make comments on interesting stimuli in the environment.

Here are a few videos of how PECS is used. Andy has completed all 6 phrases.

Andys PECS video part 1

Andy’s PECS video part 2

For more information regarding PECS…

http://www.autism-society.org/living-with-autism/treatment-options/pecs.pdf

Andy, Born Feb 4 2000 (Agpar Score 0,0,0,4 at 15 min, heartbeat @ 17 mins) 12 years old. HIE (Came home with G-Tube, Removed @ 14 mos.) Hypotonic, later dx’ed Mixed CP. Hydrocephalus has VP Shunt (revised 2000 & 2012) GMFM II almost Level I. Walks Independently but not well enough to play sports. Non-verbal. Uses ASL.

photo credit: thejbird via photopin cc

CVI - Little-Bear-Sees

Other Useful Foundations

Andrei Tallent just sent BRIGHT this description of a new foundation he is working with. The foundation is focused on Cortical Vision Impairment. Please take a moment to check out the website and learn more about this very common issue with children who have suffered a brain injury and cerebral palsy.

Cortical visual impairment (CVI) is the leading cause of visual impairment in developed countries today. In fact, it has been suggested that as many as 80% of those with cerebral palsy also have CVI. Though this is true, an appallingly few number of doctors and therapists know much about it. Many children who have CVI go undiagnosed or misdiagnosed as result. Parents are too often told there is nothing they can do to help their child learn to see. The reality is that CVI very often can and does improve, but only with focused and appropriate intervention.

We created our organization, Little Bear Sees, in 2011 in order to raise awareness about CVI among as many people as possible. Our first step was to create a website (www.LittleBearSees.org) which outlines exactly what CVI is and what you can do about it. In addition to our website , we have also created an iPad and iPhone app specifically for children with CVI (Tap-n-See Zoo) and have just released the first book about CVI written for parents by parents (Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See).

Every time we hear of a child with CVI who went undiagnosed for years, or meet a medical professional who knows nothing about CVI, we feel even more determined to raise awareness about this condition. In our experience, it is often you, the parents or caregivers, who fill the gap and become experts in CVI and advocates for your children. We hope that the information we provide will help you to do this.

Little Bear Sees Logo

Other Useful Foundations

Andrei Tallent just sent BRIGHT this description of a new foundation he is working with.  The foundation is focused on Cortical Vision Impairment.  Please take a moment to check out the website and learn more about this very common issue with children who have suffered a brain injury and cerebral palsy.

Cortical visual impairment (CVI) is the leading cause of visual impairment in developed countries today. In fact, it has been suggested that as many as 80% of those with cerebral palsy also have CVI. Though this is true, an appallingly few number of doctors and therapists know much about it. Many children who have CVI go undiagnosed or misdiagnosed as result. Parents are too often told there is nothing they can do to help their child learn to see. The reality is that CVI very often can and does improve, but only with focused and appropriate intervention.

We created our organization, Little Bear Sees, in 2011 in order to raise awareness about CVI among as many people as possible. Our first step was to create a website (www.LittleBearSees.org) which outlines exactly what CVI is and what you can do about it. In addition to our website , we have also created an iPad and iPhone app specifically for children with CVI (Tap-n-See Zoo) and have just released the first book about CVI written for parents by parents (Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See).

Every time we hear of a child with CVI who went undiagnosed for years, or meet a medical professional who knows nothing about CVI, we feel even more determined to raise awareness about this condition. In our experience, it is often you, the parents or caregivers, who fill the gap and become experts in CVI and advocates for your children. We hope that the information we provide will help you to do this.

Andy signing Dad.

Kids with Cerebral Palsy can learn how to use ASL

One would not think to teach a baby to learn how to use American Sign Language when one was diagnosed with Cerebral Palsy. However, as parents to my son who is non-verbal and has Cerebral Palsy…my husband and I did just that. When our son, Andy was about 14 months old the physical therapist was working with him on a peanut ball. He absolutely loved it. She started to sign to him “yes”. At first he would wait, then she would sign to him, he would smile, then she would give him more of what they were doing. Afterwards, she would repeat everything again. After awhile, we noticed one of his arms moving, so she took that as a sign for “yes”.  They were having so much fun, it continued on. After she left, we continued to work on it. We realized over time, he would sign “yes” when we asked him questions. He wasn’t able to shake his head up & down, it was too hard for him. So the sign was really nice to have.

By the time he was 2 years old. He had learned a number of ASL signs. “Mom”, “Dad”, “Home”, “Shoe”, “More”, “All Done” long with some others. I think the most maddening thing about him signing was only one person that was working with him knew ASL/sign language and that was his music therapist. I really think that Speech Therapist should have ASL included in their schooling. Man, if Andy was able to learn ASL at every speech session, his expressive language would have been so much higher.

With every sign he learned, he would not be able to sign it correctly at all. He had a lot of fine motor issues so it was as best as he could. We realized over time though his signing would get better. The signs he couldn’t do, he would make up his own. As long as we asked him to sign a word and he did, we learned his sign.

Over the years we have had our struggle getting the school district to provide him American Sign Language. They were under the impression that because he had Cerebral Palsy no one would understand his signs. Which is not true at all. We had always hired nannies who knew ASL, they understood him.

As of today, Andy is 12 years old and knows over 200 signs. We finally have him in a classroom where the teacher and the staff know ASL…they will also be teaching him new signs through out the school year.

Come to find out, a lot of children with Cerebral Palsy are now learning to sign. This is so exciting to us.

Here are a few videos of Andy through the years. The first video is him at 5 or 6 years old. The second video is when he was about 10 years old.

Andy signing at age 5 or 6 years old

Andy signing at age 10 years old

So if you have a child who can sign simply basic signs, continue practicing with them with each sign. Over the years hopefully the fine motor will improve or you can just accept the modified sign and that is still great!

Kristi
Andy, Born Feb 4 2000 (Agpar Score 0,0,0,4 at 15 min, heartbeat @ 17 mins) 12 years old. HIE (Came home with G-Tube, Removed @ 14 mos.) Hypotonic, later dx’ed Mixed CP. Hydrocephalus has VP Shunt (revised 2000 & 2012) GMFM II almost Level I. Walks Independently but not well enough to play sports. Non-verbal. Uses ASL.

Jordon Milroy quote.

Jordon Milroy Climbing for Cerebral Palsy Awareness

Here is the story of a young man with CP who will not let his disability stop him. He wanted to show he could do what he set his mind to an he has been climbing the stairs of the highest buildings in Australia and New Zealand. With a little help raising funds, he plans to travel to the US and Canada to scale some even taller buildings. Check out his website and his story. It is truly inspirational!

http://www.jordonmilroy.com/

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Children with Cerebral Palsy

What is Cerebral Palsy?

Reprinted from the Centers for Disease Control and Prevention:

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.

The symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care. A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person’s lifetime.

All people with CP have problems with movement and posture. Many also have related conditions such as intellectual disability Adobe PDF file; seizures; problems with vision Adobe PDF file, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

 

Types of Cerebral Palsy

Doctors classify CP according to the main type of movement disorder involved. Depending on which areas of the brain are affected, one or more of the following movement disorders can occur:

  • Stiff muscles (spasticity)
  • Uncontrollable movements (dyskinesia)
  • Poor balance and coordination (ataxia)

 

There are four main types of CP:

Spastic Cerebral Palsy

The most common type of CP is spastic CP. Spastic CP affects about 80% of people with CP.

People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. Spastic CP usually is described by what parts of the body are affected:

  • Spastic diplegia/diparesis―In this type of CP, muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. People with spastic diplegia might have difficulty walking because tight hip and leg muscles cause their legs to pull together, turn inward, and cross at the knees (also known as scissoring).
  • Spastic hemiplegia/hemiparesis―This type of CP affects only one side of a person’s body; usually the arm is more affected than the leg.
  • Spastic quadriplegia/quadriparesis―Spastic quadriplegia is the most severe form of spastic CP and affects all four limbs, the trunk, and the face. People with spastic quadriparesis usually cannot walk and often have other developmental disabilities such as intellectual disability; seizures; or problems with vision, hearing, or speech.

 

Dyskinetic Cerebral Palsy (also includes athetoid, choreoathetoid, and dystonic cerebral palsies)

People with dyskinetic CP have problems controlling the movement of their hands, arms, feet, and legs, making it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose) not only from day to day, but even during a single day.

 

Ataxic Cerebral Palsy

People with ataxic CP have problems with balance and coordination. They might be unsteady when they walk. They might have a hard time with quick movements or movements that need a lot of control, like writing. They might have a hard time controlling their hands or arms when they reach for something.

 

Mixed Cerebral Palsy

Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic CP.

 

Early Signs

The signs of CP vary greatly because there are many different types and levels of disability. The main sign that a child might have CP is a delay reaching motor or movement milestones (such as rolling over, sitting, standing, or walking). Following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.

In a Baby Younger Than 6 Months of Age
  • His head lags when you pick him up while he’s lying on his back
  • He feels stiff
  • He feels floppy
  • When held cradled in your arms, he seems to overextend his back and neck, constantly acting as if he is pushing away from you
  • When you pick him up, his legs get stiff and they cross or scissor

mother holding daughter

In a Baby Older Than 6 Months of Age
  • She doesn’t roll over in either direction
  • She cannot bring her hands together
  • She has difficulty bringing her hands to her mouth
  • She reaches out with only one hand while keeping the other fisted

 

In a Baby Older Than 10 Months of Age
  • He crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
  • He scoots around on his buttocks or hops on his knees, but does not crawl on all fours

Tell your child’s doctor or nurse if you notice any of these signs. Learn more about developmental milestones that children should reach from birth to 5 years of age »

 

Screening and Diagnosis

Diagnosing CP at an early age is important to the well-being of children and their families. Diagnosing CP can take several steps:

Developmental Monitoring

Developmental monitoring (also called surveillance) means tracking a child’s growth and development over time. If any concerns about the child’s development are raised during monitoring, then a developmental screening test should be given as soon as possible.

 

Developmental Screening

During developmental screening a short test is given to see if the child has specific developmental delays, such as motor or movement delays. If the results of the screening test are cause for concern, then the doctor will make referrals for developmental and medical evaluations.

 

Developmental and Medical Evaluations

The goal of a developmental evaluation is to diagnose the specific type of disorder that affects a child.

Learn more about screening and diagnosis »

 

Treatments and Intervention Services

According to the CDC, “There is no cure for CP”, but treatment can improve the lives of those who have the condition. It is important to begin a treatment program as early as possible.

After a CP diagnosis is made, a team of health professionals works with the child and family to develop a plan to help the child reach his or her full potential. Common treatments include medicines; surgery; braces; and physical, occupational, and speech therapy. No single treatment is the best one for all children with CP. Before deciding on a treatment plan, it is important to talk with the child’s doctor to understand all the risks and benefits. The BRIGHT CP Cure Program is driving towards a true cure for CP.

Visit the NINDS Cerebral Palsy Information Page to learn more about current treatments for CP »External Web Site Icon

 

Intervention Services
Both early intervention and school-aged services are available through our nation’s special education law—the Individuals with Disabilities Education Act (IDEA). Part C of IDEA deals with early intervention services (birth through 36 months of age), while Part B applies to services for school-aged children (3 through 21 years of age). Even if your child has not been diagnosed with CP, he or she may be eligible for IDEA services.

Learn more about IDEA Services »

 

Causes and Risk Factors

CP is caused by abnormal development of the brain or damage to the developing brain that affects a child’s ability to control his or her muscles. There are several possible causes of the abnormal development or damage. People used to think that CP was mainly caused by lack of oxygen during the birth process. Now, scientists think that this causes only a small number of CP cases.

The brain damage that leads to CP can happen before birth, during birth, within a month after birth, or during the first years of a child’s life, while the brain is still developing. CP related to brain damage that occurred before or during birth is called congenital CP. The majority of CP (85%–90%) is congenital. In many cases, the specific cause is not known. A small percentage of CP is caused by brain damage that occurs more than 28 days after birth. This is called acquired CP, and usually is associated with an infection (such as meningitis) or head injury.

Learn more about causes and risk factors for CP »

 

If You’re Concerned

If you think your child is not meeting movement milestones or might have CP, contact your doctor or nurse and share your concerns.

If you or your doctor is still concerned, ask for a referral to a specialist who can do a more in-depth evaluation of your child and assist in making a diagnosis.

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY websiteExternal Web Site Icon. Once you find your state on this webpage, look for “Programs for Infants and Toddlers with Disabilities”.Learn more about early intervention »External Web Site Icon
  • If your child is 3 years of age or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities (NICHCY) at 1.800.695.0285 or visit the NICHCY websiteExternal Web Site Icon. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities”.

photo credit: easystand via photopin cc