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James was diagnosed with quadriplegic cerebral palsy on September 14th, 2010 by his neurologist. We didn’t actually find out about the diagnosis until January 12, 2011…almost four months later. The neurologist never mentioned it the three or four times we saw him since he made the diagnosis. Stacy only found out about it because she happened to be reading through James’ medical records. We were obviously very upset. Why were we not told about this? How can a doctor forget to tell us that he diagnosed our child with cerebral palsy!?
It just so happened that we had an appointment to see a different neurologist the following day (January 13th) at a hospital closer to home. It was such a good appointment that we decided to leave James’ current neurologist and start seeing this new one.
Once we learned of James’ quadriplegic cerebral palsy diagnosis, we started doing our research, trying to find out as much as we could. We had so many questions.
In this post, I will aim to answer the most common questions asked when a parent finds out their child has cerebral palsy. Because this is quite a long post and I don’t expect everyone to read it from top to bottom, I wanted to make it a bit easier on you. If there is a specific question you are looking to have answered, simply click on the question below and you will be automatically taken to the answer to that question. If there is an additional question you would like to have answered, simply click the back button on your browser and you will come back to the list of questions.
What are the symptoms of cerebral palsy?
Can cerebral palsy be prevented?
Are there different types of cerebral palsy?
How will cerebral palsy affect his (or her) life expectancy or quality of life?
Is there a cure for cerebral palsy?
What treatment or therapy options are available for cerebral palsy?
What is cerebral palsy?
The United States Centers for Disease Control and Prevention (CDC), defines cerebral palsy, or CP for short, as “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.”
KidsHealth.org further explains that “CP often is caused by brain damage that happens before or during a baby’s birth, or during the first 3-to-5 years of a child’s life. Brain damage can lead to other issues like sight, hearing, and learning problems.”
In James’ case, his CP was more than likely caused by a stroke he suffered in utero. This stroke also caused some of James’ other issues such as vision and feeding.
What are the symptoms of cerebral palsy?
It’s important to note that the symptoms of CP vary widely from one person to the next. Mayo Clinic lists the following symptoms of cerebral palsy, but not all of the symptoms will affect each individual:
- Variations in muscle tone, such as being either too stiff or too floppy
- Stiff muscles and exaggerated reflexes (spasticity)
- Stiff muscles with normal reflexes (rigidity)
- Lack of balance and muscle coordination (ataxia)
- Tremors or involuntary movements
- Slow, writhing movements
- Delays in reaching motor skills milestones, such as pushing up on arms, sitting up or crawling
- Favoring one side of the body, such as reaching with one hand or dragging a leg while crawling
- Difficulty walking, such as walking on toes, a crouched gait, a scissors-like gait with knees crossing, a wide gait or an asymmetrical gait
- Excessive drooling or problems with swallowing
- Difficulty with sucking or eating
- Delays in speech development or difficulty speaking
- Learning difficulties
- Difficulty with fine motor skills, such as buttoning clothes or picking up utensils
- Seizures
James can check off most of the symptoms in the above list. He has low muscle tone, which means that he has to has to put in more effort to get his muscles to work properly than a normal person would. He exhibits twitches (tremors) and involuntary movements, but we associate this more with his seizures. I wouldn’t say he’s had delays in reaching motor skills milestones; I’m not sure if he ever really reached them. He used to be able to push up with his arms and lift his head, but he hasn’t done that in several years. Again, we attribute this to his seizures. We feel that the epilepsy robbed him of his ability to do this.
Because James has quadriplegic cerebral palsy, or simply quad CP, both arms and both legs are affected. He will never be able to walk and will always require a wheelchair. He will also never be able to operate a wheelchair on his own.
James has no suck swallow reflex. He is unable to eat by mouth and is fed by g-tube. He is also unable to swallow so we frequently suction secretions from his nose and throat. Because of his inability to manage his own secretions, he is prone to aspiration pneumonia.
James has never been able to talk and we don’t expect him to. Stacy and I have always wondered what his voice would sound like if he was able to talk. He does have a few sounds that he makes, so I guess he has his own language, but we haven’t figured out how to translate his “words” yet.
And as mentioned above, James has seizures. He has been battling infantile spasms and epilepsy since he was in the NICU.
What causes cerebral palsy?
The Mayo Clinic states that “cerebral palsy is caused by an abnormality or disruption in brain development, most often before a child is born. In many cases, the cause isn’t known. Factors that can lead to problems with brain development include:
- Gene mutations that lead to abnormal development
- Maternal infections that affect the developing fetus
- Fetal stroke, a disruption of blood supply to the developing brain
- Bleeding into the brain in the womb or as a newborn
- Infant infections that cause inflammation in or around the brain
- Traumatic head injury to an infant from a motor vehicle accident or fall
- Lack of oxygen to the brain related to difficult labor or delivery, although birth-related asphyxia is much less commonly a cause than historically thought”
We believe that the cause of James’ CP was a stroke he suffered in utero. After he was born, it was discovered that James has a blood clotting disorder called Factor V Leiden, which is a mutation of one of the blood clotting factors in the blood. This mutation increases the chance of developing abnormal blood clots. Although it was never mentioned, I’ve always wondered if it was possible that the Factor V Leiden disorder caused a blood clot, which in turn caused James’ stroke. Because Factor V Leiden is inherited, both Stacy and I were tested. James inherited it from his mommy and Stacy inherited it from her dad.
If you do a Google search for “cerebral palsy” or “causes of cerebral palsy” you might notice that many of the links that come up in the search are for legal firms. In some cases, cerebral palsy is caused during birth due to something that the delivering doctor did (or didn’t do). We did have an attorney look over James’ medical records to see if we had a case against the doctor or hospital, but after he reviewed the records and spoke with the delivering doctor, he did not think James’ CP was caused by hospital or doctor negligence. Because of James’ in utero stroke, we pretty much knew that was the cause of his CP, but we figured it wouldn’t hurt to have a lawyer familiar with these cases look things over.
Can cerebral palsy be prevented?
Unfortunately, there is no sure-fire way to prevent your son or daughter from having CP. There are, however, ways an expecting mother can reduce the risk of her child having cerebral palsy. WebMD lists several things you can do limit the risk:
If you are planning on getting pregnant, these are some things they recommend:
- Make sure any medical conditions such as diabetes, high blood pressure, sexually transmitted diseases (STDs), or eating disorders are being treated.
- Don’t smoke, use drugs or drink too much alcohol. Some moms might tell you that they had an occasional drink while pregnant and their child is perfectly healthy, but according to the American Pregnancy Association, “no amount of alcohol has been deemed safe during pregnancy, and if at all possible, even casual drinking should be avoided.”
- Talk to a health professional if you’re under a lot of stress, or if you live or work close to toxic subsances.
- Make sure you get shots to protect against diseases such as rubella (German measles) before you get pregnant. If you get them while you’re pregnant, they can affect the baby’s brain. You’ll need a flu shot, too.
If you are already pregnant, WebMD recommends that you:
- Go to the doctor for regular prenatal care. This can help protect against complications such as low birth weight and premature birth.
- Guard against infections. Wash your hands often. If you feel sick or get a fever, call your doctor right away.
- Have the doctor check whether you and your baby have different blood types. If so, medication can keep that from causing trouble. This can also be done after your baby is born.
After your baby is born, a couple of important steps can help ensure your newborn is on the right track.
- Before you leave the hospital, your baby should be checked for jaundice (yellowish skin and eyes). Stopping jaundice can help prevent a problem that can lead to cerebral palsy.
- Your baby’s routine recommended shots can protect him or her against meningitis and encephalitis, which can contribute to cerebral palsy.
Because cerebral palsy can sometimes happen when an infant or small child gets a head injury that keeps his or her brain from developing the right way, WebMD offers the following tips:
- At home – put safety gates at the tops and bottoms of stairs. Install windows guards so your child can’t fall out of a window. Put safety rails on his or her bed.
- In the car – Fasten your baby into whatever type of safety seat suits his or her age and size. My 2 cents: Car seat guidelines change from time to time so if you live in the United States be sure to check with the National Highway Traffic Safety Administration for current information. Also, we had our car seats checked at a local fire station to be sure they were installed properly.
- Around water – Whether it’s a baby in the bathtub, or kids splashing around in a swimming pool or lake, an adult should always be watching. Give him or her your complete attention. Don’t talk on the phone or read.
- During playtime – When your little one is old enough to ride a bike, he or she should wear a helmet. If you take them to a playground, choose one that has a shock-absorbing surface such as sand or wood mulch. My 2 cents: I’m questioning the wood mulch. I’ve fallen enough times on wood mulch to know that it hurts! Sure, it’s better than concrete, but it still hurts. I’ve seen some parks in our area start to use a rubber mulch or even a completely rubberized surface. I’ve also seen some parks replacing the older metal playground equipment with newer plastic ones.
- Always and everywhere – Resist any urge to hit or shake your child. My 2 cents: I know that this can sometimes be hard when you are tired and sleep deprived, but remember that your child’s brain is still developing and hitting or shaking him or her can cause a brain injury that can ultimately result in cerebral palsy.
Even if you follow the above recommendations from WebMD, there is no guarantee that your child won’t have cerebral palsy, but following the above guidelines will help limit the risk. In James’ case, it was something that just happened. It was kind of like a chain of events that was out of our control. We believe (although it hasn’t been proven) that his Factor V Leiden blood clotting disorder caused him to have a stroke in utero which in turn caused his cerebral palsy.
Are there different types of cerebral palsy?
Yes, there are actually four main types of cerebral palsy:
- spastic cerebral palsy
- dyskinetic cerebral palsy
- ataxic cerebral palsy
- mixed cerebral palsy
Spastic cerebral palsy is by far the most common type of CP, affecting 70- to 80% of those with cerebral palsy. Individuals with spastic CP have increased muscle tone, which means that their muscles are stiff, and as a result, their movements can be awkward. Spastic CP can be further broken down into three types, depending on which parts of the body are affected.
Spastic diplegia/diparesis
In this type of spastic 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 spastic CP affects only one side of a person’s body.
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.
People with dyskinetic cerebral palsy 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.
Individuals with ataxic cerebral palsy 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.
As you might have guessed by the name, a person with mixed cerebral palsy has symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic cerebral palsy.
As I mentioned at the beginning of this article, James was diagnosed with quadriplegic cerebral palsy. Looking at the above types of CP and their descriptions, James has a combination of spastic quadriplegia and dyskinetic CP. On the spastic quadriplegia side, both of his arms and both of his legs are affected. He has epilepsy (seizures). He has issues with vision, hearing and speech. Then on the dyskinetic side, he is unable to suck, swallow or talk.
How will cerebral palsy affect his (or her) life expectancy or quality of life?
This could be asked as two separate questions, but I think they go hand-in-hand so I put them together as one. CerebralPalsy.org lists eight factors that are “identified as areas of concern which have the capacity to shorten the life span in cases of cerebral palsy.”
- Number of impairments and key disabilities
- Severity level
- Mobility restrictions
- Feeding difficulties
- Seizures
- Cognitive functioning
- Visual acuity
- Respiratory functioning
As CerebralPalsy.org points out, “the higher the number of impairments, the greater likelihood an individual’s life expectancy will be impacted. A child with multiple impairments has multiple conditions for caretakers to properly manage.”
James has multiple impairments (feeding, seizures, no suck/swallow) that all need to be managed. Most of the time this is not an issue, but then there are times when he gets sick with respiratory issues that affect his feeding. In cases like this we need to manage two impairments simultaneously. It did take us a few years, but I think we (or should I say Stacy) has this figured out. Stacy has learned that when James has respiratory issues and has a hard time breathing, his belly sometimes gets distended and he can’t handle his feeds like he normally does. Stacy has learned to vent his belly via his g-tube to let out excess air and switch him over to either straight Pedialyte or a mix of his normal formula and Pedialyte. She also slows down his feeds so instead of being fed over his normal 45 minutes, she might back it off to an hour and a half or two hours. As his breathing gets under control, she’ll slowly work him back to his normal feeds.
The severity level of impairments is a significant component in life expectancy calculations. CerebralPalsy.org states that “severe impairment will diminish the life expectancy of a child more significantly than moderate or mild impairment. Higher levels of impairment can indicate a more serious underlying injury or condition – more significant brain damage, for instance.” They go on to say that “severe cases of Cerebral Palsy can lead to early death in newborns, babies, infants, and toddlers. The more severe a condition, the more prone the child is to premature death. Of special concern for risk of premature death are children who experience severe spasticity, and children with quadriplegia or quadriparesis.”
That last sentence is concerning to us as James is quadriplegic. They do not elaborate as to why, but I imagine that it has to do with lack of mobility and the complete dependence on others, which is discussed in the next paragraph.
When discussing mobility restrictions, CerebralPalsy.org says that “limited ability to move from one place to another, or to use both arms and legs successfully, increases a child’s dependency upon others. Restrictions on mobility increase a child’s dependence on caregivers. Such restrictions can also lead to other health problems which impact quality of life and life span. Those with physical impairment can also experience premature aging. Inactivity and lack of exercise can weaken the body and decrease immunity and cognitive function. Some children with Cerebral Palsy will use more energy to move than a child without Cerebral Palsy. The result is excessive wear on internal organs, including the heart.
They conclude by saying that “in general, the lack of upper extremity function, inability to propel wheelchair, inability to roll over, and inability to creep, crawl or scoot can be areas of concern.”
James will always be dependent on others. Because he is quadriplegic, he is unable to move on his own. He will never be able to use a wheelchair on his own, or get into his chair when it’s time to eat, or eat on his own.
Speaking of eating, feeding difficulties is the next item on CerebralPalsy.org’s list. They state that “difficulty in feeding can lead to malnutrition, a condition that weakens the immune system and can lead to muscle deterioration.
“Children who are unable to self-feed are reliant on their caregivers, medical equipment, or both. They are likely to have oral motor functioning impairment, meaning muscles required to chew, swallow and communicate are unable to function properly. This impairment can lead to failure to thrive, choking, and aspiration, which then can cause pneumonia or other life-threatening conditions. Irritation from feeding tubes can lead to infections. Infections are serious if not treated carefully.
“Feeding issues can be mitigated by properly using feeding tubes or gastrostomy. Parents can work closely with a registered dietitian to manage the nutritious value, consistency and substance of diet, and learn ways to feed that reduce the child’s risk of aspiration and pneumonia. Maintaining a healthy diet and weight optimizes health. Therapists may also work with the child to improve muscle control of the tongue, lips and bite.”
When James was born, it was determined almost immediately that he did not have a suck/swallow reflex so they used feeding tubes when he was in the NICU. He had NG- and NJ-tubes, both of which are inserted through the nose. He then had a PEG tube for his feedings and finally got a Mic-Key button (g-tube) for his feedings before he came home. His formula is delivered directly into his stomach through a feeding pump that is programmed with the rate and dose of his feeds.
James has been in the hospital more times than we can count with aspiration pneumonia, but this is not due to his feeding issues. This has more to do with his inability to suck/swallow and manage his own secretions. We have to frequently suction his nose and throat to clear his secretions so that they don’t wind up in his lungs and cause pneumonia.
Continuing on with CerebralPalsy.org’s list of things that can shorten the lifespan of those with cerebral palsy is seizures. “Children who experience seizures, especially severe and frequent seizures, in addition to Cerebral Palsy are at risk for diminished life expectancy when compared to children who are without seizure.
“With the aid of a neurologist, parents can learn how to manage and properly medicate seizure activity. Medications must be monitored and changed often. The manner of weaning from one medication and replacing with another is extremely important with some medications. Care must be taken to prevent adverse drug interventions, especially when new medications are prescribed by other doctors.
“When meeting to discuss the child’s seizures with medical practitioners, parents will need to provide information about how long the episodes typically last, what body parts are affected, the type of seizure, possible triggers, and how the child behaved during the seizure.”
James has been dealing with seizures, infantile spasms and epilepsy pretty much since he was born. We believe he had a seizure while still in the NICU, although the attending physician didn’t think so. I wrote another blog post about seizures which can be found here (link will open in new tab).
Cognitive functioning refers to multiple mental abilities, including learning, thinking, reasoning, remembering, problem solving, decision making, and attention. According to cerebralpalsy.org, “intellectual disability occurs in roughly 30%-50% of children with Cerebral Palsy. Cognitive factors that contribute to diminished life span include: Presence and severity of intellectual disability; Inability to speak intelligible words; Inability to recognize voices; and inability to interact with peers. It is unclear whether reduced cognitive function itself is the cause of diminished life expectancy, or the sign of a more severe level of impairment.”
That last sentence throws me a bit. I don’t know how the inability to speak, recognize voices or interact with peers would affect life expectancy. It seems that those disabilities would fall more under quality of life, wouldn’t they? James does not speak, and we are not sure if he recognizes our voices (or our faces for that matter), but I don’t think that would shorten his lifespan.
Visual acuity, or the ability to discern letters or numbers at a given distance, is another item on cerebralpalsy.org’s list that I am questioning. “Impaired visual function is linked to diminished life span in children with Cerebral Palsy. Current studies are focused on determining whether the actual visual impairment is responsible for shortened life expectancy, or whether visual impairment is indicative of a separate brain injury that may be life threatening in itself. Some believe visual impairment may accompany severe cases of Cerebral Palsy, which combined might indicate a risk to life expectancy.”
This is another item that seems like it falls more under quality of life than life expectancy. James has vision issues with one optic nerve that didn’t fully develop, but I don’t think that is going to shorten his life.
The last item on cerebralpalsy.org’s list is respiratory functioning. Now this one makes sense. “Respiratory functioning, as well as swallowing and chewing difficulties, is a factor in reduced life expectancy for children with Cerebral Palsy. Respiratory distress makes it difficult for the body to function and can lead to life-threatening heart conditions. Severity and frequency of respiratory infection is a significant factor. Difficulty in swallowing and feeding can lead to the inhalation of food particles. This can cause infection in the lungs or pneumonia, which are also of concern.
I mentioned earlier when discussing feeding difficulties that James sometimes has breathing issues and that he has been in the hospital numerous times for aspiration pneumonia. These episodes are not the result of inhalation of food, though. In James’ case, he has no suck/swallow reflex, cannot manage his own secretions, and needs to be suctioned to clear his airways of those secretions. Sometimes those secretions find their way into his lungs and cause pneumonia.
Is there a cure for cerebral palsy?
Unfortunately there is no cure for cerebral palsy (CP). At least not yet. But this might be changing. According to an article on CanChild.ca written in 2017, “there are currently 12 clinical trials around the world using stem cells to treat CP. Stem cell transplantation is a regenerative therapy that has the potential to replace the damaged and non-fuctional cells in the the brains of CP patients, as well as to provide support to the remaining neurons and oligodendrocytes.”
What treatment or therapy options are available for cerebral palsy?
While there may not be a cure for cerebral palsy, there are many treatment and therapy options available that can help manage the symptoms of CP. These treatments and therapies will vary from person to person depending on the type of CP they have, the symptoms, and the severity of those symptoms.
The following list are just a few of the things that are available. This is by no means meant to be an exhaustive list. Work with your doctors and/or teachers (if the individual is in school) to see what might be best for your particular symptoms.
Assistive Aids
- Braces and splints
- If you have an orthopedist on your health care team, he or she may recommend orthotics to correct muscle abnormalities and improve function such as sitting or walking. For example, James’ wrists kind or curl in (as you can see in the picture at the top of this page) so he has wrist braces to keep them straight. For his scoliosis, James used to wear a thoracic-lumbar-sacral orthosis (TLSO) to help keep is back straight. Note: he had a full spinal fusion surgery in May 2019 and no longer needs to use a TLSO.
- Glasses
- Hearing aids
- Walking aids
- If an individual is able to use their legs, but are a bit unsteady, walking aids such as walkers or canes can be used.
- Wheelchairs
Medications
There are many medications available to treat the symptoms of cerebral palsy. I will not list the actual medications here, but I will give a brief description of the six (6) categories of medicines that are typically used in the treatment of CP. It should go without saying, but please consult with your primary health care provider before giving any medications. This includes over the counter medications. With any medication, there is always a chance of adverse effects, side effects, or interactions with other drugs.
Anticholinergic Medications
Medications in this category are typically used for people who have a nonspastic type of CP. Anticholinergics are used to treat muscle stiffness and uncontrolled movements like tremors and spasms. They can also be used to reduce saliva production and decrease secretions. James was on one of these medications to reduce his secretions. The trick was finding just the right dose so that his secretions were decreased enough to reduce the amount of suctioning required, but not too much that he was completely dry.
Anticonvulsant (Anti-Seizure) Medications
In the US Centers for Disease Control and Prevention’s 2013 Autism and Developmental Disabilities Monitoring (ADDM) Cerebral Palsy Network Community Report, they made a reference to a 2008 study where it was found that 41% of children with CP also suffered from epilepsy. James is one of those people, has suffered from infantile spasms and seizures since he was in the NICU, and has been on many different seizure meds.
Antidepressants
Many people with chronic illnesses, such as cerebral palsy, suffer from depression. Feelings of powerlessness, dependence on others, lack of coordination, quality of life are just some of the factors that that may contribute to one’s depression. James has never been on antidepressants. To be honest, I’m not even sure if we would be able to tell if he is depressed or not.
Anti-Inflammatories (Pain Relief)
Pain can be a result of therapies, surgeries, or even CP itself. Pain medications, either prescription, or over-the-counter can be used to alleviate this pain.
Muscle Relaxants (Antispastic Medications)
These medications can be used to help relax contracted, overactive, stiff, or spastic muscles. These medications work by increasing the range of motion or inhibiting involuntary muscle contractions. Antispastic medications are often the first treatment choice for reducing tremors or controlling widespread spasticity. James has been prescribed a muscle relaxer.
Laxatives and Stool Softeners
Children’s Health Queensland Hospital and Health Service notes that “constipation is a common problem for many children with cerebral palsy. The cause is not always clear. It may be due to reduced mobility, certain medications, not enough fluid intake or related to difficulty eating enough fibre.” We have been adding a little fiber power (MiraLAX) to James’ morning feed and making sure he gets enough water throughout the day, which seems to keep his stools pretty soft. On the rare occasion that he still gets a bit constipated, we use over-the-counter suppositories like Pedia-Lax.
Remember to check with your doctor, health care provider, or pharmacist before administering any medications (prescription or over-the-counter) because there is always the chance of an adverse reaction between drugs.
Therapies
Aqua therapy (Hydrotherapy)
Aqua therapy, also called hydrotherapy or aquatic therapy, takes place in water, usually a pool. According to cerebralpalsy.org, aqua therapy has many benefits, including:
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- Provides resistance
- Encourages a wider range of movement and opposition
- Alleviates stress and tension
- Reduces pain and tension in muscles and joints
- Protects against injury
- Improves cardiovascular conditioning since the heart pumps more blood per beat when body is submerged in water
- Decreases post exercise discomfort
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James went to aqua therapy for a while at a local hospital. I think it was good for him, although I’m not sure if he knew what to do it the water. He had a flotation device under his arms and around his torso, and he just kind of floated there. He is quadriplegic so he can’t move his legs without assistance.
Occupational therapy (OT)
CerebralPalsy.org states that “the goal of occupational therapy is to promote a child’s ability to perform daily rituals and activities in a way that will enhance their quality of life and make possible the enjoyment of independent living.” They go on to include a list of tasks that an occupational therapist will work on:
Home:
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- Eating
- Dressing
- Personal grooming
- Brushing teeth
- Bathing
- Writing
- Grasping objects
- Playing
- Using a computer
- Using a telephone
- Interacting with family and caregivers
- Preparing food
- Housekeeping
- Using adaptive equipment or assistive technologies
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School:
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- Opening doors
- Sitting at a table or desk
- Handwriting
- Using the bathroom
- Traveling on the bus or in a vehicle
- Opening a locker
- Holding, reading books and supplies
- Avoiding or overcoming physical obstacles
- Interacting with teachers, aides and peers
- Taking part in school activities
- Completing assignments, homework
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We are fortunate that James is able to get occupational therapy through the special education program in our local school district. Some school districts in our area don’t have special education programs and outsource their special needs kiddos to other schools in the area.
Physical therapy (PT)
CerebralPalsy.org describes physical therapy as “the rehabilitation of physical impairments by training and strengthening a patient’s large muscles – those in the arms, legs, and abdomen. The goal of physical therapy is to maximize functional control of the body, or increase gross motor function.” They list the following goals of physical therapy:
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- develop coordination
- build strength
- improve balance
- maintain flexibility
- optimize physical functioning levels
- maximize independence
James also has physical therapy through school.
Recreational therapy
I have fond memories of playing baseball, basketball and soccer as a kid. But what about those children (or adults) that have disabilities such as cerebral palsy? That’s where recreational therapy comes in. Also called therapeutic recreation, recreational therapy focuses on designing ways in which an individual can fully participate in recreational activities of their choice. Recreation therapists work to identify the interest level, capabilities, adaptive approaches, and in some cases modified processes required to successfully complete. Inclusion in life-enhancing activities improves a child’s physical, mental and social experiences.
Speech and language therapy
The focus of speech and language therapy is to help a person with CP communicate their thought and ideas. Speech pathologists work on a person’s oral motor skills and communication skills by using exercises that train the brain to pronounce, understand, and interpret words, sounds and gestures.
James is non-verbal and we don’t expect him to ever talk. His speech therapist (pathologist) at school is teaching him to use switches, a type of communication device, in order to “speak”. Examples of these devices can be found here: https://enablingdevices.com/product-category/communication-devices/.
Vision Therapy
This is another therapy that James has at school. Vision issues are common in people with cerebral palsy. According to thecerebralpalsysite.co.uk, “a survey of nearly 10,000 European children with CP estimated that around that 1 in 3 had some visual impairment, while 10% reported severe impairment.” In another study, the Spectrum of Visual Disorders in a Population-Based Cerebral Palsy Cohort, found that “close to half (49.8%; 106/213) had a visual impairment. The majority of these individuals had strabismus (55.7%; 59/106) and a slightly lesser fraction had refractive errors (20.7%; 22/106) or severe visual loss (18.9%; 20/106). The vast majority of children with severe visual loss had spastic quadriplegia (83%; 17/20) or were nonambulatory (i.e., Gross Motor Function Classification Scale IV/V, 80%; 16/20).
VisionTherapy.org describes vision therapy as “a type of physical therapy for the eyes and brain and is a highly effective non-surgical treatment for many common visual problems such as lazy eye, crossed eyes, double vision, convergence insufficiency and some reading and learning disabilities. In the case of learning disabilities, vision therapy is specifically directed toward resolving visual problems which interfere with reading, learning and educational instruction.”
Hearing Therapy (Audology)
Hearing impairment is another common issue found in individuals who have cerebral palsy. In a study published in the January 2018 issue of Otoloty & Neurotology, they found that “of 940 patients, 367 (39%) had hearing loss. Of the 1,629 individual ears with HL, 782 (48%) had conductive, 63 (4%) had sensorineural, 410 (25%) had mixed, and 374 (23%) had unspecified hearing loss.”
The goals of hearing therapy are to Determine existence and type of hearing impairments, provide rehabilitative services, assess amplification devices (such as hearing aids), and to teach individuals ways in which they can make the best use of their remaining hearing.
As you can see, there are many therapies available for those with cerebral palsy. The type of therapy or therapies used will vary from person to person. We are fortunate that James is able to get occupational, physical, speech, and vision therapies as part of the special education program in our school district. Some school districts in our area don’t offer special education. Children with special needs that live in those districts would either be outsourced to another district that does offer special education or would be referred to a “special needs school” that caters to children with special needs.
Conclusion
In this article, my goal was to answer some of the most common questions parents ask when they first hear that their son or daughter has cerebral palsy. I know that it is a hard diagnosis to hear. To be honest, I am not really sure if Stacy and I were surprised by the diagnosis. James had so many issues when he was born and was already a year old when he was diagnosed. I think we were kind of expecting it by that point.
I’d like to leave you with a quote by Joan Ryan from her book The Water Giver:
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.”