St. Louis Doctor with Cerebral Palsy Offers Hope

ST. LOUIS - Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn’t been doing his exercises, stressing the importance of keeping muscles loose and limber.

“We know it’s not fair, but that’s the way it is,” Brunstrom-Hernandez tells 15-year-old patient Sam Ward. “Do you hear me? I know what I’m talking about.”

Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children’s Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.

Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.

Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that’s a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.

“I didn’t want to be surrounded by more of me,” she said. “I didn’t feel good about myself because of my disability.”

A chat in 1997 with Dr. Mike Noetzel at St. Louis Children’s Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn’t progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.

“All I said was, ‘You’ve got some good ideas. I think people would listen to you. Let’s at least try to start something,’” he recalled.

The clinic opened in May 1998.

Many clinics in the U.S. treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.

Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages — babies to adults — from across the world. The center has treated about 2,000 people since opening 15 years ago.

Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him — even through her motherly admonitions.

“She helps me walk better,” he said. “Just be better.”

Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.

“We went to St. Louis, and it was a whole different approach,” Champion said. “It has turned her life around completely.”

Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.

“If the wind was blowing hard enough, I’d fall down,” Brunstrom-Hernandez recalled.

Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.

“She insisted that I not be dependent,” Brunstrom-Hernandez said. “She insisted that I pull my weight. It’s a good thing. It made me tough, and it made me strong.”

Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.

It wasn’t until she started the clinic that she embraced who she was and what she could do to help others.

“I have gotten as much or more out of taking care of these patients as they have ever gotten from me,” she said. “It changed my life. They saved my life. They taught me how to believe in myself. They taught me how to look at myself differently.”

Moving around the clinic, only Brunstrom-Hernandez’s gait shows any effects of her cerebral palsy, though rheumatoid arthritis causes her pain. She acknowledges it can be physically exhausting.

“I have to work all the time to stay on my feet,” she said.

It’s a dedication that doesn’t go unnoticed by her colleagues.

“I think the empathy does come through,” Noetzel said. “Her line is kind of a tough one: If you really want to do best, this is what you need to do. I think there’s a much greater acceptance coming from her.”

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Family Vacations for Children with Cerebral Palsy

By John Lehman

Planning a vacation is an exciting but sometimes difficult task for any family, particularly families who have children with cerebral palsy. Special considerations must be taken into account well before the plane tickets are purchased. Fortunately, the task is not impossible. With a little bit of research, homework and proper planning, you can rest easy knowing your cerebral palsy child will have a fun and relaxing experience during your family’s vacation.
 

How to Prepare

There are many things you should keep in mind when deciding on a destination for your family vacation. Perhaps the most important step you can take when planning your vacation is to call your destination in advance and make sure they can accommodate your child. This includes potential hotels, restaurants or any attractions you are considering.

For example, will your hotel have adequate wheelchair accessibility? What about allergy risks? Are there hospitals nearby in the event of an emergency? All of these questions should be answered by calling your hotels or destinations ahead of time, well before you book your rooms. If the accommodations aren’t satisfactory, you’ll want to consider a different location.

Being in a new place may be disorienting for your child. You’ll want to be prepared in the event that your child panics or becomes upset. Some families combat this by trying to stay true to routines that their child is used to. If your child takes a nap in the afternoons, make sure you set aside time to allow him or her to do so. Of course, if your child is taking special medications, you’ll want to bring these along and have them take the medications at the appropriate time. Make sure you bring extra pills or dosages, just in case.
 

Where to Go

In today’s world, vacation destinations have proven to be much more accommodating towards special needs families than in decades past.

Some destinations are specifically designed with special needs families in mind. One such location is Morgan’s Wonderland, located in San Antonio, Texas. This amusement park’s mission is to provide an environment where all children can have fun together, regardless of their disability (or lack thereof). Activities include fishing, carousels, playing musical instruments, watching shows performed hourly and taking part in more traditional park activities, such as swing sets, sandboxes and slides. All of these activities are fully accessible for both children and adults with a variety of conditions.

Resort vacations aren’t out of the question, either. Some families with special needs have enjoyed visiting the National Ability Center in Park City, Utah. The center has many different active and outdoor activities for you and your family to enjoy year round, such as horseback riding, hiking, skiing, swimming and more. The center prides itself at offering these activities to children of all ages and ability levels, with the hopes of improving self-esteem, confidence and physical strength in the process.

Even famous resorts, such as Disney World, are renowned by special needs families for their excellent accommodations. Lodging at one of Disney’s many resorts are fully equipped for children or families with special needs, including text-to-speech devices, detachable showerheads and safety bars. Many of their biggest attractions have accommodations for special needs families as well.
 

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Abilities Expo: Enhancing the Lives of People with Disabilities

By Stacey Bucklin

We recently posted an “In the News” story from CNN about assistive technology called“Rule Your Computer with a Head-Mounted Laser Beam.” The product intrigued me (who doesn’t love laser beams?), but what really piqued my interest was the event where it was featured, something called the Abilities Expo. I did a little digging and couldn’t resist sharing this resource with the CP Family Network community.
 

THE Event for People with Disabilities

The Abilities Expo, presented by Abilities365.com, plugs itself as “THE event for people with disabilities.” They even have programs targeted specifically for kids. Registration is FREE and grants you access to exhibitors offering the latest products and services, the opportunity to participate in free workshops, and world-class events and activities for all ages.

Their website states “For the past three decades, we’ve dedicated ourselves to making a better life for the 1 in 6 Americans with disabilities. This unique forum brings the Community together to learn, network and be empowered.” Expo exhibitors cater to children and adults with disabilities and their caregivers, offering products such as:

• Assistive technology
• Daily living aids
• Medical equipment
• Mobility products
• Essential services

This video from www.karenkain.com seems to sum up the Expo pretty well. Karen is a Parent Ambassador for the 2013 Abilities Expos and has been attending the events for 17 years!

<iframe width="560" height="315" src="http://www.youtube.com/embed/XCupcga5TDc" frameborder="0" allowfullscreen></iframe>
 

Upcoming Expos

Abilities Expo events are held across the United States (and even abroad!) every few months. Chances are there’s an Expo coming to a city near you. Here’s a list of upcoming events:

• NY Metro – May 3-5, 2013
• Chicago – June 28-30, 2013
• Houston – August 2-4, 2013
• Boston – September 20-22, 2013
• Singapore – November 8-10, 2013
• San Jose – November 22-24, 2013
• Los Angeles – February 28-March 2, 2014
• Atlanta – March 14-16, 2014

Share Your Story

Have you been to an Abilities Expo or a similar event designed to serve people with disabilities? What did you think? Share your thoughts in the comments below!
 

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Is Constraint Induced Therapy Right for Your Child?

You may have heard the term Constraint Induced Therapy (CIT) in a special-needs moms’ circle or during a therapy session with your child. Perhaps you’ve heard of its potential benefits in recent news stories. How much do you really know about CIT, and how do you determine if it’s right for your child?
 

Constraint Induced Therapy Defined

Pediatric Constraint Induced Movement Therapy or CIT is a type of treatment that teaches the brain to “rewire” itself following a brain injury. The focus is to restrict a child’s good extremity (arm, hand, leg, etc.) in order to force usage and improved function of the extremity needing rehabilitation. CIT often involves intensive training of the more-impaired extremity for a certain number of hours per day for a designated period of time. Children with a more severe level of spasticity or mobility impairment may require more daily hours of constraint and a longer period of intense therapy.

The CI Research Institute states that Constraint Induced Movement Therapy is the only rehabilitation technique shown to markedly change the organization of activity in the brain. Various studies have shown favorable outcomes suggesting that CIT may be a useful tool in the treatment of upper-extremity dysfunction in hemiplegic CP and other forms of CP.

Depending on the specific goals and level of achievement, it may take multiple sessions to realize the intended benefit.  Remember, you’re re-training the brain!!! Be patient.
 

Is Your Child a Candidate?

CIT is not appropriate for every child with cerebral palsy. Talk with your pediatrician, therapists and orthopaedic specialist to discuss whether or not your child could achieve positive results from Constraint Induced Movement Therapy.

Your child will need to be monitored throughout the course of treatment to check for any complications. Discuss with your therapist what “trouble signs” you need to look for, such as chafing, rash or skin breakdown with the restrained limb. Check fingers and toes to make sure there’s no impediment of blood flow as a result of a cast or restraining device that is too tight.
 

Goals

Your therapist should have a Care Plan mapped out, detailing the specifics of your child’s therapy plan, including hours per day, additional therapies being implemented and the overall duration of the CIT sessions. Request a copy of the Plan. You may want to create a chart or journal tracking and annotating your child’s daily sessions. Detail the length of time the constraint device is used and what skills your childed work on during the session.  Make notes of improvement and struggles.  This will give the therapist a better picture of your child’s progress or need for additional assistance.
 

Coping Mechanisms

What is CIT like for a child? Here’s an analogy. If you’re right-handed, imagine someone casting that hand, forcing you to do everything with your left! Keep in mind, you probably have normal abilities and range of motion in your left hand. What if you didn’t? What if you had no good function in your left hand and now your right hand is immobilized! While adults you have the maturity and psychological skills to cope with frustration, many children do not. Couple that with a child’s immaturity and possibly an inability to communicate and you can imagine the reaction your child may have to this type of therapy.

There will be tears! Ask your therapist how to help your child establish coping mechanisms and ways to help your child get past the frustration. Make it fun! Incorporate play therapy in your CIT sessions! You want these sessions to be productive and fun, not a screaming match between you and your child. For children with developmental disability and cognitive delay, discuss with the therapist the best ways to introduce this therapy to your child.

For children with the cognitive skills to understand, have your therapist help you explain to your child the concept and goals of the therapy. Explain the number of hours per day the constraint session will last and try to set a schedule that everyone can agree with. Be sure to consider whether or not any of the constraint hours will overlap hours your child is in school. You may want to start out small and work up. Also try to schedule hours when you can play an active roll in your child’s session. Pediatric therapy based on stringency is unrealistic. You need to be consistent but flexible. There may be days when your child just isn’t being cooperative, and you find yourself skipping an hour here or a day there. Discuss with your therapist some ideas that will give you flexibility for the unexpected.
 

Conclusion

As with any new therapy, consult your child’s doctors and care providers before embarking on a treatment plan. Do your research and weigh the benefits and risks before deciding whether or not Constraint Induced Therapy is right for your child.

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Seizures and Cerebral Palsy

By Lee Vander Loop
CP Family Network Editor

As the parent of 4 grown children, one of whom has spastic quadrapalegia cerebral palsy, I feel like I’ve experienced my share of parental stress and fears of raising 4 children and dealing with the challenges of maintaining the best quality of life possible for my daughter with CP.

I’ve experienced the heart stopping moment of having my 3rd born not recognize me after a concussion and a multitude of other parental trials and worries, but nothing could prepare me for watching my daughter with cerebral palsy experience her first grand mal seizure also known as tonic-clonic seizures.

No training, literature, insight or experience can prepare you for the heart stopping, gut wrenching experience of watching your child suffer through a seizure. Whether it be the first seizure or 50th, they all feel like the first with the overwhelming sense of fear, helplessness and frustration that comes with the inability to stop your child’s suffering.

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures or epilepsy have cerebral palsy. Additionally, although learning disabilities are common with children who experience seizures, not all children who suffer with seizures experience learning disabilities.

Depending on the severity of the trauma and cerebral injury, infants who suffer injury due to a birthing trauma may experience seizures immediately after birth. In the case of my daughter who suffered severe global cerebral insult as a result of neonatal asphyxia, she experienced 3 days of uncontrollable seizures immediately after birth.

What is a Seizure

Seizures differ, depending on which portion of the brain is involved. Nerve impulses are constantly being transmitted from brain cells and processed by neurotransmitters. Seizures occur as a result of abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of these excess impulses reach skeletal muscle fibers and trigger the violent contractions witnessed with a variety of seizures.

Groups of Seizures

Focal Seizures occur in only one part of the brain or one hemisphere. Generalized seizures occur in both hemispheres of the brain.

Atonic Seizures are characterized by sudden loss of muscle tone, particularly in the lower extremities, often resulting in falls which puts the individual at risk for head injury and other physical injuries.

Generalized Tonic-Clonic Seizures also known as generalized convulsions or grand mal seizures are commonly seen with cerebral palsy.

Tonic Seizures spread throughout the brain, and are normally followed by unconsciousness, twitching legs and arms, convulsive body movements, and loss of bladder control. A child may bite their tongue during such a seizure. The “tonic phase” of these seizures is characterized by sudden muscle contractions and rigidity (hypertonia/spasticity).

Clonic Seizures – Involves recurring and coordinated jerking movements involving both sides of the body as well as rhythmic contractions of the affected muscle groups and violent and extreme gross motor movements. I’ve had the misfortune of witnessing a tonic-clonic seizure with my daughter. She was literally vibrating across the bed with the convulsive gross motor involvement.

Complex Seizures – Involve involuntary but possibly coordinated movement such as lip smacking, chewing and abnormal oral motor activity. With my daughter I called these “birdie seizures”. The oral motor involvement she exhibited involved repeatedly opening and closing her mouth, bringing to mind a baby bird in a nest waiting for food.

Myoclonic Seizures – Characterized by sporadic jerking movements, usually involving both sides of the body, that may progress to violent gross motor convulsive movements.

Partial (focal) Seizures are confined to one part of the brain and may be simple or complex. Partial (focal) seizures result from electrical impulses from one part of the brain and are usually a motor or sensory seizure that is restricted to one side of the body. The individual remains conscious. However, if the seizure progresses to a more generalized seizure, a loss of consciousness will occur.

Petit mal (absence) Seizures – Also known as Absence Seizures with this type of seizure a child may appear to be “staring off into space”, and will be unresponsive to stimulation or their environment. I’ll never forget the “vacant stare” my daughter exhibited the first time I saw one of these seizures. It was obvious, even to me, that something was wrong. I had never witnessed such a seizure. These seizures don’t pose the same hazard some seizures do, but they can put a child at risk of aspiration if they occur while a child is eating.

Fever (febrile) Convulsions- Febrile seizures are convulsions brought on by a fever in infants and small children. During the seizure a child may lose consciousness accompanied by tremors or shaking. A majority of febrile seizures are harmless and there is no evidence to suggest that they cause brain damage. However, children who have experienced febrile seizures that are lengthy or that recur within 24 hours or children with cerebral palsy are at greater risk of developing epilepsy.
The National Institute of Neurological Disorders and Stroke (NINDS) provides a comprehensive online fact sheet on Febrile Seizures, provides a detailed and informative description of this type of seizure as well as information on diagnosis and treatment.

Simple Partial Seizures - Cause muscle twitching, chewing movement and numbness or tingling. Partial complex seizures- Are characterized by a brief loss of consciousness, behavioral, emotional symptoms, loss of memory and automatisms. Temporal lobe and frontal lobe seizures are often in this category.

Diagnosis

EEG – Your child’s neurologist will probably want to do an Electroencephalogram (EEG) if they suspect seizure activity. Although EEGs are often helpful in diagnosing some types of seizures, it may not detect all. EEG’s are typically performed in the hospital’s sleep clinic and involve placing electrodes on the child’s scalp

Brain Scans and MRI – The neurologist may order a CAT scan or Magnetic Resonance Imaging (MRI) to be performed. Although these studies don’t show the electrical impulses, they may show lesions or other possible suspected causes of seizure activity.

Video EEG – This study is usually performed overnight at a hospital’s sleep clinic. It involves a video camera and constant EEG monitoring though out the study. With the video and EEG combined, the physician can collate any suspected abnormal physical motor occurrences with the EEG, better identifying the seizure activity with the physical manifestations.

Document It

If you suspect your child may be experiencing seizures, keep a journal and document episodes or behaviors you suspect to be seizure related. If possible have some one video tape the episode. This will give your child’s pediatrician or neurologist insight into what you are witnessing, since it’s unlikely your child will experience a seizure during your 15-30 minutes visit with the physician.

In the case of documentation, note duration of the episode, did you child becomecyanotic (turn blue) or have blue lips which would indicate they weren’t breathing properly, what was your child doing at the time, note any abnormal behaviors your child may have exhibited that made you suspect the behavior as seizure activity.

If your child already has a diagnosis of seizure and you don’t feel that their current medication is managing their seizures effectively, again, keep a journal of any suspected break through seizure activity you may see. There are many medications and combinations of medications that can be used for seizure control. If the seizures are adversely impacting your child’s quality of life, don’t give up. Persevere and continue to question your child’s physicians until you find the right medication or combination of medications that offers a better level of control. In my daughter’s case, I was told, considering the severity of her cerebral injury, she would never be seizure free, and that she most likely experienced silent seizures even during sleep. After birth she was prescribed an anticonvulsant which seemed to do little to control the seizures. It just seemed to “zone her out.” This was not acceptable to me and I persisted with the neurologists until they changed her medication and we found a combination that proved effective, at least during her waking hours, without the side effects that she seemed to experience with her initial medication. I was amazed at her new level of awareness after the change. To this day that same combination of medications has continued to provide an optimum level of control. Never give up!

Treatments and Medications

• Protect a person from harm during a seizure. One of the complicated risks of seizures is that further damage can occur in the brain with severe seizures. The individual can also be hurt while falling or during spastic episodes resulting from grand mal seizures.
• Anticonvulsant medications are normally prescribed in the management of a seizure disorder. Tegretol, Phenobarbital, Dilantin, Klonopin, Valium and Topamax are several examples of medications that may be prescribed.
• Vagus Nerve Stimulation Therapy – This therapy is relatively new and involves a surgically implanted battery, with leads threaded under the skin and attached to the vagus nerve. Vagus Nerve Stimulation involves a device which sends short bursts of electrical energy into the brain via the vagus nerve.
• Ketogenic Diet – This form of therapy involves a diet high in fats and low in carbohydrates and makes the body burn fat for energy instead of glucose. This form of therapy has been proven effective in some children in the prevention of seizures.

Side Effects

Every medication involves side effects. Some children may tolerate one medication but another child may experience intolerance or contradictions with the same medication. In my daughter’s case, I was in a position where I had to decide what side effects were acceptable and which weren’t. With the initial anticonvulsant, my daughter seemed unresponsive to her environment and “disconnected” from the world. That was not acceptable to me, but the new medication offered its array of side effects also. I remember researching the new medication in my boss’s Physician’s Desk Reference (PDR) and calling up the neurologist almost frantic!

Our neurologist was exceptional, and we communicated with ease. When I told him of my research in the PDR and my concerns (I think I heard a slight groan) he patiently explained to me that yes, the side effects and contradictions I was reading were cause for concern but the PDR had to list every incident of contradiction so the ratio seemed out of proportion. In most cases, the incidents were more a rarity then the norm. He assured me of the safety of the new medication and told me what would constitute severe side effects or contradictions that would warrant intervention. I thanked him for his time and for taking my call. My baby was a part of my world for the first time and was showing a new level of awareness. That went far in outweighing the unavoidable side effects and possible contradictions that came with the new medication. This isn’t meant to discourage a parent’s research, just the opposite. Educate yourself on all medications. That’s the only way you make an INFORMED DECISION.

There is much research being conducted and many clinical trials occurring in the field of neurology and seizure management. Many individuals are living seizure free as a result of the advances made in Neurologic medicine.

Questions to Ask Physician

• You may have a thousand questions in your head about your child’s possible seizures, medications, or management, but you won’t think of half of them during your appointment with your child’s physician or neurologist. Write them down as you think of them!
• Ask your physician what side effects to expect with any medication and what contradictions you need to be aware of and what to do in the case of a serious adverse side effect.
• Should your child take the medication with or without food? Make your child’s neurologist aware of any other medications your child may be on, whether it’s seizure-related medication or not.
• Make sure you’re aware of any blood work or lab work that needs to be done and the frequency. Many anticonvulsants require blood work to monitor the levels of the medication in the blood and to monitor possible kidney and liver function in relation to the medication.
• Some children experience seizures that may be triggered by different environmental or dietary factors. Ask your physician if there are any environmental factors or dietary issues that you need to be aware of.

Therapy Options for Children with Tactile Sensitivity

By Lee Vander Loop
CP Family Network Editor

Many children with cerebral palsy experience some type of sensory impairment. A study by a Spanish university concluded that children with CP showed reduced sensitivity to non-painful stimuli but enhanced sensitivity to painful stimuli compared to healthy individuals. What’s behind these sensitivities and what can parents and caregivers do to help?

The Anatomy of Our Senses

The portion of the brain that responds to touch and other environmental stimulation is called the somatosensory cortex.  This system is responsible for multiple sensations including light touch, pain, pressure, and temperature. The somatosensory cortex also assesses the size, shape, and texture of objects based on their feel and helps judge body position using sensory input from the joints, muscle and skin.

Many times, cerebral palsy results in damage to this region of the brain, so it’s not surprising that many children with cerebral palsy experience sensory challenges and difficulties. Data suggest that altered somatosensory brain processing in people with cerebral palsy may cause overstimulation of the portion of the brain.  This can result in inappropriate responses to everyday experiences, such as physical affection, play, bathing and other activities.

Does Your Child Have Tactile Sensitivity?

Every child is sensitive from time to time, but frequent negative reactions to touch may indicate a problem. According to the Family Education Network, signs of tactile sensitivity in children include but are not limited to:

• Becoming upset about being dirty
• Difficulty feeling comfortable in clothing
• Anxiety about walking barefoot
• Avoiding touch
• Unusual sensitivity to pain
• Strong dislike of grooming activities such as nail clipping and hair washing

Children with sensitivities are often irritable and don’t adjust well to changes or new situations. They spend so much energy dealing with the many unpleasant perceptions and sensations they face on a daily basis, they don’t have much left to deal with anything else.

Helping Your Child Cope

If you suspect your child may be experiencing sensory processing difficulties, ask your pediatrician or therapist for an evaluation. If left untreated, tactile sensitivity can seriously interfere with a child’s quality of life.

Children suffering from environmental and tactile sensitivity often benefit from occupational therapy. An occupational therapist will work with a child in a sensory-rich environment to help them learn coping strategies that will allow them to behave in a functional manner in daily life.  Occupational therapy for children is designed to be fun but challenging, with the end goal that the child can eat, play with friends, attend school, and participate in other activities that were difficult before therapy.

At Home Activities

There are many activities you can do with your child at home to help them become more comfortable with “unpleasant” sensations. Your child’s occupational therapist will recommend activities appropriate for your child’s unique situation. A few of the most common at-home therapeutic activities are mentioned here.

The Wilbarger Brushing Protocol

This popular therapy relies on the application of firm and rapid pressure to the arms, hands, back, legs and feet with a specific plastic surgical scrub brush. This is followed by gentle joint compressions to the shoulders, elbows, wrists, hips, ankles and sometimes, fingers and feet. A knowledgeable therapist should tell you if this is an appropriate therapy for your child and show you how to conduct it properly.

Deep Pressure/Weighted Products

There are many wearable weighted products on the market designed to provide deep pressure to children suffering from tactile sensitivity. The deep pressure provides important sensory information to the joints and muscles that helps calm sensitive children. Weighted products should be used under the supervision of a pediatrician or therapist.

Messy Play

Many children with tactile sensitivity have an aversion to touching things of a certain texture or “messy” things. Therapists often encourage children to explore these items through play. Messy play can involve play dough, glue, finger paint, sand or other hands-on materials. Ease into messy play slowly. If your child is fearful of the materials, encourage play in a less threatening way. For example, therapists recommend you allow your child to use your hands to start touching the material. Allow him to put objects in and out of the messy materials. As your child becomes more comfortable with the material, slowly encourage him to explore it more. As with any therapy, you should consult your child’s doctor or therapist before beginning messy play at home.

Conclusion

Tactile sensitivity in children with cerebral palsy can have a huge impact on their quality of life. Supervised therapy should be started at an early age to help a child learn to overcome and cope with his negative reactions to daily activities. For more information about tactile sensitivity, talk to your child’s doctor and check out the additional resources listed below.

Additional Resources

Tactile Sensitivity in Children

Tactile Defensiveness… So THAT’S Why He Acts That Way!

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The Benefits of Personal Writing for Children with Cerebral Palsy

By Drew Dillard

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As so many have learned first-hand, writing is one of the greatest tools for healing and personal growth we have. From an early age, children of all abilities need to be shown different ways to process and express their feelings, fears, hopes and triumphs. Personal writing, whether done in a private journal, a public blog or some combination of both, provides a valuable outlet for children with cerebral palsy to grow, express and heal.

The Benefits of Personal Writing

From the moment we sense they might grasp the concept, we begin teaching young children to write because we understand what an important tool it is to functioning as a human being. We know what an important discipline it is to brain development and communication.

Journal writing, the process of recording one’s personal thoughts and feelings, can help your child process difficult feelings, develop coping skills and solve personal issues.  It helps a child purge negative feelings and emotions and gives them a much-needed tool they can use to process the unforeseen circumstances and inevitable confusions we all face.

Getting Started

As with anything, the most effective way to teach “journaling” to a young child is by interactive modeling. At a consistent time each day when you think your child might be most focused, spend a little time reviewing recent activities by talking about them, reviewing photographs and drawing pictures. Write at least some of it down (or type it) and read aloud as you write. Let your child participate and provide feedback about what he or she thought was important about that day. Save the results in a notebook or on a computer page so they begin to grasp the lineage and evolution of events. Encourage them to draw pictures of not only what they did (playing in the park, a visit to the doctor), but also how they felt about it. It may be as simple as a smiley face or a frowny face.

Stimulating the Mind

As they develop the ability to write on their own, keep this practice up. Have them add at least one written line to each daily entry. You may want to prompt them with topics or questions you feel pertinent to the experience. But if they prefer their own tangent, let them go with it. After all, it’s their mind we’re trying to unlock. You may have introduced journaling as a simple documentation of a day’s activities, but with a little direction a child can foster the ability to process thoughts and feelings, work through problems, develop intuition and gain insight. It’s a tool that will benefit them for the rest of their lives.

Once a child can write longer pieces, whether manually, electronically or with the help of adaptive equipment, suggest exercises aimed at broadening perspective such as writing “a letter to your future self,” or “writing dialogue by assuming the role of the other person.”

Blogging

Blogging started in the 1990’s with the advent of internet publishing tools, but really took off in the mid-2000’s with the popularity of MySpace. As of October 2012 there were around 77 million Tumblr and 56.6 million WordPress blogs. Today, Blogger, owned and operated by Google, is the world’s most popular blogging site.

People maintain blogs for many reasons, but mothers blogging about the trials and tribulations of raising children seems particularly prevalent. There’s a good reason for that. Blogging allows parents a space to vent and process feelings; to share and communicate with other parents, finding answers to tough questions and fostering a support network. If the parent of a special needs kid isn’t writing their own blog, chances are they are at least monitoring others to help gain insight and perspective on what is often a difficult journey.

If you are blogging about your special needs kid and you haven’t done so already, let them do the occasional guest spot. You don’t have to share every second of your blogging with them (and probably shouldn’t), but let them understand what it is you’re doing and why it’s important to you. If they seem interested, maybe start a separate co-blog with them.

As they get older they may want to maintain a blog of their own. There are many worthy blogs written by tweens and teens about their personal experiences with cerebral palsy. Recent studies have shown that adolescents blog to maintain friendships and engage in positive discussions of everyday teenage life. For young people whose physical limitations hinder their being out in the world as often as others, blogging is a great way for to them to feel less alone and more connected.

It should go without saying, but before your child is allowed to be on the internet, especially unsupervised, establish a firm set of rules and guidelines. Filters can be installed on computers that will block some, but never all, access to dangerous internet content. Subscribe to an ISP (Internet Service Provider) that offers parental controls, and use them. You can also install software that will filter what your teen can post online, obstructing personal information such as phone numbers.

Regarding content of your child’s blog, obviously there is no litmus test for what should be shared with the world and what should be kept to the confines of one’s personal journal.  As a parent and guardian of a young person, it is your responsibility to be the gatekeeper of what you believe acceptable for your child to “publish.”

Technology

My personal feeling is that pen to paper is the most effective way to connect with your inner self, but this does not always come easy to children with mobility issues who may benefit from electronic alternatives.

It seems that a day doesn’t go by without the announcement of some new piece of must-have digital technology. Children with cerebral palsy have not been left out of this revolution. Children with communication difficulties, whether purely physical or a combination of physical and intellectual, have so many more tools available to them than kids of even 10 years ago.  Specially designed laptops and tablets allow for computer access almost anywhere. From adaptive keyboards to voice-synthesizer software, a child who struggles to communicate clearly, or even speak at all, can be understood by others.

Through journaling, a child with cerebral palsy will discover an all-accepting, nonjudgmental friend and some of the best (and cheapest!) therapy they will ever get.

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