National Cerebral Palsy Awareness Week in Australia

June 31, 2012

From http://www.cerebralpalsyaustralia.com/

This week in Australia they are celebrating National Cerebral Palsy Awareness Week (CP Week) to recognise the achievements of people with cerebral palsy and to create greater awareness, understanding and acceptance.

CP Week 2012 will be held from Monday July 30th to Sunday August 5th. Through CP Week, Member Organisations work to make our community more inclusive, more accessible and more welcoming for people living with Cerebral Palsy. Support is seen throughout the week through activities, programs and initiatives.

The important message for our community is to focus on seeing people with cerebral palsy firstly just as people, and to work together to achieve full social inclusion.

“National Cerebral Palsy Awareness Week highlights that with the right support people with Cerebral Palsy can and do reach their potential, despite the economic, physical and attitudinal barriers often faced,” said Glenn Rappensberg, President, Cerebral Palsy Australia.

Here is an exclusive interview from Col Clifford as he talks with Angela Tillmans, the CEO of the Cerebral Palsy League, and Laura Scurr who has Cerebral Palsy and has graduated with a double degree from the USQ Toowoomba.

http://blogs.abc.net.au/queensland/2012/07/download-cerebral-palsy-week.html

For further information please contact Cerebral Palsy Australia.

Choosing Your Child’s First Wheelchair

By Lee Vander Loop
CP Family Network Editor

About a third of children with cerebral palsy are non-ambulatory and will require the use of a wheelchair for transportation outside, indoors, or both. Getting the right wheelchair at an early age helps a child gain independence and all the confidence that can inspire.

When a child reaches a size where they can’t be carried safely, around 3 years old, it’s time to get a wheelchair. If you’re new to this need, it is easy to get overwhelmed by all of the choices. But as a parent who has dealt with this issue for many years, there are really only fourbasic considerations:

• Is it comfortable?
• Is it reasonably adaptable?
• Does it provide the needed support and alignment?
• Is it easy enough to transport?

That said, there’s an amazing array of wheelchairs and associated technology available today that didn’t exist even 10 years ago. Lightweight, ultra-light, electric, “smart,” sports, all-terrain and customized seating are just some of the wheelchair options for non-ambulatory children and adults in today’s world. There are even wheelchairs that incorporate gyroscopic technology and four-wheel drive.

Selecting a Wheelchair Seating System

Most hospitals and all rehabilitation centers offer “seating clinics.” This is where physical and occupational therapists evaluate a child’s needs and make recommendations for a wheelchair, a.k.a. seating system. Be aware that these clinics may deal with only certain manufacturers and therefore won’t be showing you what other options may be available.

A main consideration of therapists is to choose a seating system that distributes a user’s weight away from areas of the body that are most at risk for pressure sores. For someone who spends hours of their day in the sitting position, the parts of the body that are the most at risk for tissue breakdown include the ischial tuberosities, coccyx, sacrum and greater trochanters. The seating system also must provide stability, comfort, shock absorption and aid in seating posture.

Custom seating systems can be created for individuals with scoliosis or other complex muscular skeletal conditions when it’s obvious that standard seating systems aren’t suitable.Usatechguide.org, developed by the United Spinal Association, offers an impressive list of manufactures of custom and molded wheelchair seating systems.

Questions to Ask

You should ask these questions of whatever seating system your child’s therapists recommend:

• How and why did the therapists select the style, options or seating system they are presenting?
• Can the chair/seating system be adjusted for future growth, changes in posture, or function?
• Can the wheelchair or seating system be folded or converted for easy transport?
• Can the chair be used in a vehicle tiedown system (if you will be using a tiedown system)? If so, what adaptions need to be made?
• What additional accessories are available, such as seating trays, clamps to attach switches or alternative communication devices?
• What adaptations are being added and do they facilitate your child’s needs?
• What type of headrest is being used and what parameters are being used in assessing the best headrest for your child?
• What type of harness system will be used with your child’s new wheelchair or seating system and what is its crash-test rating? Examples of today’s offerings of harness systems can be found at Convaid.  A five-point restraint harness is recommended for children.

What about a Powered Wheelchair?

A Swedish study of wheelchair use among children with cerebral palsy found, not surprisingly, that children using powered wheelchairs experienced much greater independence than those that required adult pushing. Therefore, the researchers suggested that children be introduced to a powered wheelchair as soon as they can safely begin to use one.

Additional Resources

For additional advice from the CP Family Network, read Stroller and Wheelchair Selection.

The RESNA Wheelchair Service Provision Guide, developed by the Rehabilitation Engineering & Assistive Technology Society of North America, offers a wealth of information on wheelchair selection.

The major U.S. wheelchair manufacturers that offer pediatric power wheelchairs are: Invacare,Permobil, Pride Mobility, and Sunrise Medical.

National Registry of Rehabilitation Technology Suppliers is a national association that provides lists and locations of people who specialize in complex rehab wheelchairs and seating positioning systems.

How to Spot a Brain Shunt Malfunction

By Tenia R. Johnson, writing for the CP Family Network

My six-year old son Braden has spastic quadriplegia cerebral palsy caused by complications of a premature birth (27 weeks gestation). He spent two months in the neo-natal intensive care unit (NICU) before we could bring him home.

At about six months of age, Braden developed a brain bleed, which led to a condition called hydrocephalus. Hydrocephalus causes the head to swell up like a balloon and affects brain development. To treat this condition, Braden underwent a ventriculoperitoneal (VP) shunt. During this surgery, a small hole is drilled into the skull so that a small tube can fit inside. The tube runs down the neck and chest and into the stomach cavity, allowing fluids to drain from the brain to the stomach. A small pump is inserted under the skin at the back of the head to help move the fluid.

Needless to say, this was a very scary surgery. Little did I know that we would have to endure surgical revisions four times within a nine-month period because of problems with the tubing and with drainage. I’m sharing my experience in hopes that others parents of children with brain shunts can learn from our journey.

What to Look For

For most children, a clear sign that a VP is not working is a painful headache. Because Braden could not communicate his pain to me, I quickly had to learn to look for other symptoms. Signs that a VP shunt is not working may vary from child to child. However, contact a doctor immediately if your child:

• Is not eating well
• Seems unusually sleepy or lethargic
• Seems unusually weak
• Vomits during feeding
• Experiences seizures

Braden experienced all of these symptoms. The first time Braden’s shunt malfunctioned he went into a tonic-clonic seizure. The second time he went into a partial seizure and his breathing was compromised. The third time he wouldn’t eat and kept vomiting. The last time he showed no obvious symptoms, but my maternal instinct and past experience told me something wasn’t right. Braden had revision surgeries after each of these episodes. In the last surgery, the neurosurgeon chose to drill a separate hole and insert a second tube into Braden’s brain to avoid the risk of a fatal bleed from removing the first tube.

It has been five months since the last revision and Braden is doing well, although memories of those tough months are still fresh on our minds. Now, when we come to the ER, they know us by name. I cannot say that each surgery gets easier; they certainly don’t. However, I have relied on the strength of my family and my strong faith in God to get me through the tough times.

I love my son Braden very much and have learned so much from him. I am his voice, and after dealing with his medical issues for six years, I’m only getting better and stronger. Thank you, Braden. Mommy loves you.

Growing Up with Cerebral Palsy

By Crystal McClure
Writing for CP Family Network

Bright, beautiful, fun loving, strong in faith and determination, understanding and compassionate. These are just some of the words that people have used to describe me. They are exactly what I strive to be each day. You may be thinking, “Those words could be used to describe anyone.” While that is true, these words hold a lot of meaning and value in my life. Such words as those mentioned above provide immense encouragement for someone in my position. What am I talking about? Living a full life and being all I can be even in the midst of trials and difficulties.

I am a twenty-eight-year-old woman with spastic Cerebral Palsy. This means that I have very tight muscles and heightened muscle tone, which makes walking difficult. As a result, I use a wheelchair to be mobile. By looking at me, the only way to tell there is something wrong is my wheelchair. Most who know me do not call attention to my physical limitations; they simply make accommodations to include me in whatever they may be doing at the time. I am a very smart and driven individual. If I were able to walk, there would be absolutely no difference in you or me.

Family Life

I grew up in a small town in Tennessee. You blink you miss it. I am the older of two girls by three years. My parents never made a big difference between my sister and me growing up. They treated us equally. When it came time for me to have an operation or therapy, my sister understood my need for a little extra attention. She also loved to help in any way she could, and still does. The rest of my family was and still is the same way. They treat me no differently than anyone else in the family.

While growing up I had to endure three major surgeries. My hips grew out of socket. They had to be put back into place three times. I also had the tendons in my hamstrings and adductors clipped. The first of these surgeries was done at a local hospital. Then at the age of two I began going to Shriners Hospitals for Children in Lexington, Kentucky. I was a patient there till I was 17.

Shriners was able to provide me and my family with the most up-to-date care and treatment available. They were a true blessing. My family did not have to bear the financial burden of my medical care at Shriners. Everything at the hospital is covered by donations and is free of charge to patients and their families.

Standing Out

The town where I grew up had only one school. My sister and I both went there for grades K-5. I was the only student there with a physical disability. Not only was this different for me, but the other students as well. When lunchtime would come, or any other time that we left the classroom, my classmates would sometimes fight over who would push me to lunch, music, etc. At times, this was unnerving for me because it made me feel like a toy in a tug-of-war. My teachers were a big help when this would happen. They were quick to step in and suggest either the students take turns or that I could do it on my own. They never treated me any differently than the other students.

In kindergarten, I sat down on the floor during reading time sometimes, and I took naps on the mat just like the other students unless I used that time for walking using my walker. During 1st and 2nd grades I sat at the table with the other students during reading time. I also sat in the same desks they did or had my desk lowered to the height of theirs and sat in a regular chair.

Accommodating My Needs

The only time I ever felt out of place was during recess. There wasn’t a lot I could do because the playground equipment wasn’t handicap friendly. My Dad built the first set of swings I could actually use on the playground. Two subsequent sets were ordered by the school. Unfortunately, at some point or other they all got broken because the older kids would play on them when my class was not at recess. If the swings had been taken down at the end of my recess time and stored properly this would have been prevented. I had an aide with me from beginning to end. She helped me take notes, write in class assignments, change classes, go to the restroom, and whatever else I needed.

As far as accommodations made to my curriculum, I had extended time for testing and was allowed to leave five minutes before class change so I would not have to fight through the crowds. At the end of each year my Mom had what was called an M-Team meeting with my teacher to discuss my class performance. This included what my strong points were, my weak points, any accommodations that would need to be put into place for the following year, etc. All of this information was written in what is known as an IEP (Individual Education Plan). This file stayed with me from K-12th.

Looking back on my elementary school years, I would not change them for anything. I am glad I was the only student in such a small town school with a physical disability because it exposed my fellow classmates and peers to what it is to be different and helped me learn to see myself as one of them.

Preventing the Summer Boredom Blues

By Lee Vander Loop
CP Family Network Editor

It’s the first full week of summer and children have been out of school just a few weeks. Already, many parents are beginning to hear the growing mantra: “I’m bored!” As a parent of four children, I have a very clear memory of the frustration and challenges of keeping my children busy and entertained through the summer months. The last thing any parent wants is to watch their child spend their summer vacation in front of the television or enthralled in countless hours of playing video games.

Most children have a preconceived notion that every day of summer should be exciting and adventurous. Children with special needs are no exception. As parents, we feel an obligation to provide our children with memorable summer breaks, without breaking the bank! Determining how to manage that day-to-day challenge can be exhausting for parents of a special needs child, especially when you factor in possible accessibility issues that may arise for children in wheelchairs or with mobility challenges.

During the 27 years I spent raising my children, I found that you need only look in your own backyard to find quality, fun-filled hours for many children. When I asked my children, who are now in their 20s, what their most memorable summer memories were, I was surprised to learn that it wasn’t the expensive, extravagant trips to Disney World or other costly vacation adventures. Their fondest, lasting memories are of time spent with family and friends. Memories of pool parties, sleepovers, cook-outs and quality activities in their own backyard were some of their favorites.

The key to a boredom-free summer is to “Keep it simple.” Summer vacations are about spending quality time with our children and family and creating lasting memories, both of which can be achieved on a budget and close to home!

How can you get started planning an entertaining summer for your family? First, get out the calendar. As you come up with activity ideas, choose a day and note the activity or outing on the calendar. Your children do not need to be involved in your planning and brainstorming sessions! You can present the “agenda” to them after you’ve ironed out the details. It may also be beneficial and productive to communicate with other parents. If your child has close friends from school that they don’t get the opportunity to spend time with during the summer, call their parents and try to arrange play dates. Even if it’s just one day a week, your children will appreciate the opportunity to spend time together. You can discuss activity ideas with the other parents and even rotate planning responsibilities, with each family taking turns providing the day trip or whatever activity is chosen.

There is no shortage of fun, local summer activities to excite the whole family. Here are a few ideas to get you started:

Day Trips – Day trips to local, inexpensive attractions are wonderful ways to surprise the children with an unexpected adventure and hours of enjoyment! Putt-putt golf courses, trips to a local botanical garden, petting zoo, water park or other small-town attraction provide a day of entertainment and something out of the ordinary.

Get Outdoors – Studies show that today’s kids spend far less time exploring the outdoors than their parents’ generation did. Contact your local Department of Natural Resources for information on accessible outdoor recreation opportunities in your state including camping, fishing and other outdoor activities.

State Parks – Your state park is a wonderful place to enjoy the great outdoors. Today, many local and state level parks provide handicap accessible and adaptive activities and programs. Check with the park ahead of time to find out what is offered in your area.

Local Zoo – What child doesn’t enjoy a day at the zoo?! Pack a picnic lunch for an inexpensive day out. If possible, visit on a weekday to avoid crowds. Some zoos offer discounts mid-week, so be sure to check their website when planning your visit. Check the Association of Zoos & Aquariums to find an accredited zoo or aquarium in your community.

YMCA – The YMCA exists in many communities and offers a variety of adaptive sports programs and activities for children with special needs. Check their website for programs in your area.

Fun at Home – Plan a day’s worth of backyard activities and invite your child’s friends over. Fill water balloons for water balloon tosses or other water play, plan backyard camp-outs, crafts and games and activities that everyone can enjoy. Search the internet for ideas. Sites such asDisney Family Fun and Crafting with Freckles provide wonderful and creative ideas for hours of fun-filled activities in your own backyard!

An enjoyable and memorable summer vacation doesn’t have to put you in debt. It doesn’t require cross-country trips or fighting the crowds at the big name amusement parks. It just takes some planning and exploration of your own community!

More Resources

Disability Friendly Beaches

Best Vacation Spots for Families with Special-needs Children

Accessible Vacations Listed by State

Gimp on the Go Disabilities Travel Publication

Accessible Playgrounds

Selecting a Wheelchair-accessible Van

By Lee Vander Loop
CP Family Network Editor

Many families raising a non-ambulatory child face the challenge of finding appropriate transportation when their child becomes wheelchair-dependent and can no longer be transported in a car seat. Parents struggle with questions of where to find financing, what vehicle to choose and what modifications are needed. The process can be overwhelming, but we have some suggested questions to ask and what to look for as you begin your search.

Choosing a Vehicle

New or Used?

When purchasing any vehicle, cost is usually the first and foremost concern. When choosing a vehicle for modification, there are additional costs involved. Both new and used vehicles can be converted for wheelchair accessibility. Adding your own modifications allows you to tailor the vehicle to meet your family’s specific needs.

You may also consider shopping for a used vehicle that has already been converted, which may be a cheaper option than purchasing and modifying a new vehicle. When shopping for an existing conversion van, make note of the head clearance, type of lift system installed, age of the vehicle, age/model/ condition of the lift system and the age/type/condition of the wheelchair tie-down system installed. If you’re not pleased with any of these features, inquire as to whether the dealer is willing or able to convert the vehicle to meet your needs.

Type of Vehicle

Mini-vans and full-sized vans are the most common choice for vehicle conversions. Vans that have been converted for the handicapped are referred to as “conversion vans.” When shopping for a vehicle for conversion, make a list of features that are important to you. This will allow you to assess whether each vehicle is suitable for your needs.

Modifications

Tie-downs or Mounts

In order to ensure your wheelchair-dependent child is safe during transport, you must modify your vehicle to include tie-downs or wheelchair mounts. When a vehicle is converted, it often requires cutting or drilling holes into the floor to mount the docking station or strap tie-down systems.

The wheelchair tie-down systems most people prefer are electronic docking systems such as the products available from EZ Lock, the Q’Straint QLK system, the Slide’N Click System and the Sure-lok Dock’n’Lock system. You can read more about each type of system by visiting the manufacturers’ websites.

My Experiences

As the parent of a wheelchair-dependent child, I have used many types of vehicles, lifts, and tie-down systems over the past twenty years. It took us many years to find the best combination of vehicle and systems to suit our needs and we learned a lot along the way!

Our first converted vehicle was a Ford E-Series van, similar to a contractor’s van. The van initially included two rear bench seats. We had the vehicle modified to remove one of the bench seats and cut out a portion of the floor panel to mount the strap tie-down docking mounts and the mechanics for the lift system. This vehicle and its conversion package proved to be less than convenient. The lift itself was a Braun System with “grate” type platform and, when in the elevated position, blocked access from the sliding side door of the vehicle.

Additionally, the wheelchair strap tie-down system proved to be cumbersome, requiring us to climb around on the floor of the vehicle attaching the assortment of hooks and straps to the wheelchair and securing them in their respective slots on the floor. It also took considerable strength to pull the straps taut before locking them down with the spring-type ratchet system.

We replaced this vehicle with a full-sized conversion van with extended head clearance. This vehicle offered more space and interior maneuverability and was ideal for our large family. However, it came with issues as well. Converting this vehicle required the removal of the second rear passenger Captain’s Seat to allow space for the lift system and our daughter’s wheelchair. The added head clearance was a plus but, as you can imagine, this vehicle was not economical on gas. Also, if you’re unaccustomed to driving a large vehicle, it can be intimidating to navigate and parking in tight places. As with our previous vehicle, we used the strap tie-down system, requiring us to climb around on the floor, pulling and tugging the straps in an attempt to secure them in their docking stations. The Crow River Folding Platform Lift we chose for this vehicle was an improvement over our previous. This model of lift folded up to a box, providing clearance and access to the side door.

Our third and final vehicle was a Ford Transit Connect van. We installed a rear entry Braun Millenium Lift system. A special platform was designed because the vehicle came with a ribbed cargo floor that was too uneven for the mounting of the lift docking system. We were also forced to remove the additional bench seat, so there was only one seat in the rear next to our daughter’s wheelchair.

The features I enjoyed most about this vehicle and conversion were the side entry doors on both sides of the vehicle and a standard elevated roof for increased head clearance. Also, this vehicle maneuvered more like a car than a van and the gas mileage was excellent! We used an EZ-Lock Tie Down system which freed us from crawling around on the floor, fighting with tie-down straps! We had initially considered a ramp system but we were advised that it would require a more extensive and costly conversion including cutting out the floor to accommodate the ramp. This type of conversion package is more practical for a smaller individual and wheelchair and may not be feasible for an adult or tall individual with a larger wheelchair.

Final Thoughts

In summary, do your research! There are many, many vehicle conversion options, just as there are countless lift options available. When inquiring at a dealership, remember they are salespeople and may try to sell you what is convenient for them rather than what is best for your family. When we purchased our last vehicle, I had to educate the salesperson as to the lift options available. Initially, we were considering a ramp system but when that proved too costly, I researched other options. I educated the dealership about the Braun lift system in relation to the Transit Connect series of vans, which was new to the U.S. The dealership was unaware of the conversion options related to this vehicle. Special needs parents – always the teachers!