Levels of CP

We thought it would be helpful to provide more clarity regarding the various levels of CP, as it has a very wide spectrum of abilities.  The team that we see at Grandview provided us with a copy of "The Gross Motor Function Classification System (GMFCS)" which is used in the medical world to define the levels of CP (Levels 1 to 5).  We are unsure of what level James is as of yet.  It will be more clear once James is 2 (corrected age not actual).  Grandview and Sick Kids will "correct" James' age until he is 3. In other words, because he was born 12 weeks early, motor abilities will be assessed using his full term expected birthday (October 22nd instead of August 1st). We've had the hope that James is level 1 but according to the criteria below he is looking to be more like a level 3 at his stage of development right now.  Of course, more will be revealed with time.  We've also discovered that there appears to be quite a variety and range within each level as well.  Here's a detailed description of the levels:

Level 1- Walks without restrictions, limitations in more advanced gross motor skills.

Before 2nd Birthday: Infants move in and out of sitting and floor sit with both hands free to manipulate objects. Infants crawl on hands and knees, pull to stand and take steps holding on to furniture. Infants walk between 18 months and 2 years of age without the need for any assistive mobility device.

From age 2 to 4th birthday: Children floor sit with both hands free to manipulate objects. Movements in and out of floor sitting and standing are performed without adult assistance. Children walk as the preferred method of mobility without the need for any assistive mobility device.

From age 4 to 6th birthday: Children get into and out of, and sit in, a chair without the need for hand support. Children move from the floor and from chair sitting and standing without the need for objects for support. Children walk indoors and outdoors, and climb stairs. Emerging ability to run and jump.

From age 6 to 12th birthday: Children walk indoors and outdoors, and climb stairs without limitations. Children perform gross motor skills including running and jumping but speed, balance, and coordination are reduced.

Level 2- Walks without assistive devices, limitations walking outdoors and in the community.

Before 2nd birthday: Infants maintain floor sitting but may need to use their hands for support to maintain balance. Infants creep on their stomach or crawl on hands and knees. Infants may pull to stand and take steps holding on to furniture.

From age 2 to 4th birthday: Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.

From age 4 to 6th birthday: Children sit in a chair with both hands free to manipulate objects. Children move from the floor to standing and from chair sitting to standing but often require a stable surface to push or pull up on with their arms. Children walk without the need for any assistive mobility device indoors and for short distances on level surfaces outdoors. Children climb stairs holding onto a railing but are unable to run or jump.

From age 6 to 12th birthday: Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have at best only minimal ability to perform gross motor skills such as running and jumping.

Level 3- Walks with assistive mobility devices, limitations walking outdoors and in the community.

Before 2nd birthday: Infants maintain floor sitting when the low back is supported. Infants roll and creep forward on their stomachs.

From age 2 to 4th birthday: Children maintain floor sitting often by "W-sitting" (sitting between flexed and internalizing rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomachs or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self-mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.

From age 4 to 6th birthday: Children sit on a regular chair but may require pelvic or trunk support to maximize hand function. Children move in and out of chair sitting using a stable surface to push or pull up with their arms. Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult. Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

From age 6 to 12th birthday: Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair manually or are transported when travelling for long distances or outdoors on uneven terrain.

Level 4- Self mobility with limitations; Children are transported or use power mobility outdoors and in the community

Before 2nd birthday: Infants have head control but trunk support is required for floor sitting. Infants can roll to supine (from front to back) and may roll to prone (from back to front).

From age 2 to 4th birthday: Children floor sit when placed, but are unable to maintain alignment and balance without use of their hands for support. Children frequently require adaptive equipment for sitting and standing. Self-mobility for short distances (within a room) is achieved through rolling, creeping on stomach, or crawling on hands and knees without reciprocal leg movement.

From age 4 to 6th birthday: Children sit on a chair but need adaptive seating for trunk control and to maximize hand function. Children move in and out of chair sitting with assistance from an adult or a stable surface to push or pull up on with their arms. Children may at best walk short distances with a walker and adult supervision but have difficulty turning and maintaining balance on uneven surfaces. Children are transported in the community. Children may achieve self-mobility using a power wheelchair.

From age 6 to 12th birthday: Children may maintain levels of function achieved before age 6 or rely more on wheeled mobility at home, school, and in the community. Children may achieve self-mobility using a power wheelchair.

Level 5- Self-mobility is severely limited even with the use of assistiv\e technology

Before 2nd birthday: Physical impairments limit voluntary control of movement. Infants are unable to maintain antigravity head and trunk postures in prone and sitting. Infants require adult assistance to roll.

From 2 to 12th birthday: Physical impairments restrict voluntary control of movement and the ability to maintain antigravity head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology. At level 5, children have no means of independent mobility and are transported. Some children achieve self-mobility using a power wheelchair with extensive adaptations.

Distinctions between Levels 1 & 2: Compared with children in level 1, children in level 2 have limitations in the ease of performing movement transitions, walking outdoors and in the community, the need for assistive mobility devices when beginning to walk, quality of movement, and the ability to perform gross motor skills such as running and jumping.

Distinctions between Levels 2 & 3: Differences are seen in the degree of achievement of functional mobility. Children in level 3 need assistive mobility devices and frequently orthoses to walk, while children in level 2 do not require assistive mobility devices after age 4.

Distinctions between levels 3 & 4: Differences in sitting ability and mobility exist, even allowing for extensive use of assistive technology. Children in level 3 sit independently, have independent floor mobility, and walk with assistive mobility devices. Children in level 4 function in sitting (usually supported) but independent mobility is very limited. Children in level 4 are more likely to be transported or use power mobility.

Distinctions between levels 4 & 5: Children in level 5 lack independence even in basic antigravity postural control. Self mobility is achieved only if the child can learn how to operate an electrically powered wheelchair.

Fueling Up!

Since James started ABM therapy he has made some major progress in rolling (and I'm not so bad myself...it's harder than it looks!)

Anat Baniel Method - part 1

The Anat Baniel Method (ABM) is a type of physiotherapy that Ali and I came across while sharing experiences with other families that have children with CP.  The ABM approach to therapy is unique and drastically different then the dominant conventional therapies out there.   We initially approached  this therapy with hesitation and doubt.  But after some research and deliberation we decided to give it a go because of its success with CP and spasticity.  We tried a few introductory sessions and quickly began opening up to its method.

Judy working with James

One of the main differences is that conventional therapies largely focus on muscle strengthening and development, while ABM focuses primarily on brain development and awakening neuropathways.  Both are integral to development and they correlate to one another.  However, the methods of invoking these changes of development are very different.  ABM puts forth what it calls the 9 essentials for the healthy development of children with special needs.

Each of these principles are fascinating in their own right because they reveal how children and parents will learn to improve the developmental delays that they experience due to the presence of a disability or disorder.  Anat Baniel describes each at length in her book "Kids Beyond Limits".  The main idea is that parents and children need to move their focus away from fixing the problems, and move towards connecting through the Nine Essentials and incredible gains will happen as a result.

Conventional therapies for children with CP tend to focus on learning the positions and experiences of sitting, standing, and walking through training, exercising and repetition.  To learn the positions of sitting, standing and eventually walking for James involves forcing him to do movements that are not natural for him, and that increase the tone, or spasticity, in his muscles in order to do so.  The thought in conventional therapy is that through practice, strengthening and pushing through the pain the child will gain the resiliency, discipline and an ability over time to eventually become independent in their movements.

Every one of these milestones (sitting, standing, walking) is so incredibly important for a child to develop if they have the ability to do so.  Sitting, standing and walking opens up endless possibilities for a child to explore, to gain independence, to interact with their world with excitement all the while growing, making connections and developing at very rapid pace.  These skills build off of one another, and it is as if a new world is opened to them with each skill learned.  For most people, these skills are learned and become automatic as the neuropathways used to accomplish these ends become more "grooved in" with time.  Accomplishing these skills can also act as gateways for other types of development such as speech, eating and cognition.  As the core gains strength and mobility to sit, stand and walk, the brain can choose to focus on other stimulation instead of fighting to maintain a specific position in spasticity in order to explore other things.

Which therapy to choose?

When researching about ABM, we quickly ran into conflicting messages about how to bring about the most effective development for James.  ABM puts forth some contrary ideas to conventional therapy.  It suggests that going too fast too quickly can actually have detrimental effects on the child and may lead to habits that children need to "unlearn".  Since humans learn through the experience and not what the intended goal is, you always have to ask the question "what information is the brain being taught?"  If James is being positioned to stand by holding onto something and having an adult hold him up he automatically engages the muscles in his legs creating stiffness.  So, what is he learning?  ABM would suggest that he is learning that it hurts to stand, and that spasticity is encouraged because of the repetitive nature of doing the same thing over again.  Even though the intention is that he is learning to stand, ABM would say that he is primarily learning that standing is frustrating and is uncomfortable.  Doing this before he is ready will limit his motivation.

The ABM method attempts at addressing development at the origin of the disability - the brain, not the muscles.  When the correct neuropathways are established and awakened, the muscles will begin to do what they are supposed to do.  If he could, he would - is one of the reasoning tools used to explain the importance of a focus on the brain.  In other words, if James could sit independently, he would.  So, if he is not, ABM would state that we need to awaken James' awareness of his legs, core strength and a capacity to learn and grow into sitting.

ABM also suggests other principles that are contradictory to conventional therapy such as what to do when he cries, and how soon to begin practicing milestones.

Crying: Conventional therapy might have a child learn to work through the pain (within obvious thresholds) and learn to become more perseverant and learn the skill through effective practice.  ABM would respond to crying in a different way.  They might pull back and continue working on skills the child is mastering already because the crying indicates he is not ready for this yet.

Milestones: Conventional therapy sees the importance of training the child to develop the skills needed to sit, stand, walk as early as possible.  ABM encourages the child to take their time, approach new skills when they have mastered previous ones.  If you go too quick too soon, you will lose the chance to develop important brain pathways needed for future tasks.

Now, Ali and I are not experts by any means on brain and motor development.  So we decided to talk to a lot of people in the medical world and weigh their thoughts against the experiences that families have had with ABM.  After a lot of thought we decided to try ABM for three months and reassess afterwards.  One thought was that the time for creating new neuropathways is now.  And it would make sense to allow ABM to work unhindered.  If we did a bunch of conventional therapy and then tried ABM, James would have more to "unlearn".

The Fixing Paradigm:

One of the concepts in ABM that is an alternative perspective in physiotherapy is what Anat calls the "fixing paradigm".  I find this idea fascinating in many respects because I think it hints at a larger ingrained human behaviour that we tend to apply to our relationships, our expectations of ourselves and even our own spirituality.  The idea is that whenever you see a problem or limitation, you tend to try to fix it.  Now, It's only natural for us all to fix problems that arise in our lives.  And this inclination is, most of the time, very helpful.  For example, if a car is not working properly, you take it to the mechanic; when we experience pain or hurt, the easiest thing to do is to look for reassurance and a time in the future when it will feel better.

However, when problems arise that are beyond our reach of fixing we still tend to naturally treat these problems as if they are fixable.  Our mind and emotions initially go into the default mode of repairing, restoring, fixing.  After all, we are taught that the highest level of thinking is to "problem solve".  But what do you do with a problem that can'tbe solved?  What do you do with a brain injury that is permanent?  This is where the fixing paradigm begins to have a negative effect.  Anat suggests in her book that when encountering a child with special needs the fixing paradigm can in fact lead to further complications.  "We need to back off from trying to makethe child do what he can't do... we are 100 percent dependent on the child's brain to make the necessary changes".

The easiest thing - avoiding the problem and pretending it doesn't exist - is a horrible response as it disconnects you from reality.  Of course, having the problem go away is what everyone wants, but, unfortunately that is not one of the available paths.  It is much harder to face the hardship or uncertainty of the unknown of the problem.  Attempting to be honest about it often makes people feel uncomfortable because we are not used to conversations outside of a polite veneer.   The honesty is unscripted, reveals struggle and emotion, and lack the resolution that we are all so used to.   One suggestion from Anat in her book is that you try not to embrace the "fixing paradigm" that looks at a situation through the lens of its limitation, its problem.  Instead, try to look at the situation from the realm of connection.  Allow your expectations to shift and to see what your child isdoing.  James has demonstrated some really exciting small gains in the first two weeks of trying the ABM method.  He has begun to roll over reaching for an object more frequently and he has also demonstrated a flexibility that we haven't seen up to this point.  Those are really exciting gains, and are the building blocks of further gains to come.  ABM has taught Ali and I to value the discipline of "slow".  It is so important not to rush, to overwhelm, to try and gain milestones that typically developing children achieve.  If you do this, you loose the process of refining small movements along the way (such as head control, arm, shoulder and back strengthening) that are far better for his longterm ability then simply achieving a milestone like sitting independently quickly.

The path that ABM suggests for us to follow is to learn how to reframe what the word "problem" means as well as reframing what the word "solving" means.  The Nine Essentials support a framework for approaching your child and participating alongside him in his day to day.  Although hesitant at the start, Ali and I have agreed to try ABM for three months to see how James responds.  Our journey in ABM begins with connecting with James using a heightened awareness of him and helping him begin to create his own unique solutions to his environment.  Way to go little man!

Conductive Education

Conductive Education (CE) is a community rehabilitation program that operates through the March of Dimes Canada organization.  Their aim is to "work on the brain to change the body. Participants are taught skills and techniques to help them overcome the challenges of their disability - they learn how to apply these strategies to their everyday life, becoming more independent." (quote from the March of Dimes website)

Ali and I signed James up for CE which occurs once a week for a period of 12 weeks.  Here, James works in a small class setting with other children on their motor development.

Video links of James working with Monika at March of Dimes CE:

And this one is just too cute not to post:

Watching James learn and explore during these sessions has been very rewarding.  He has already shown some small gains, and he loves the songs that Monika and her team sing as they encourage his movement through exploration.  Another neat aspect of this program is their value on social learning.  There are other children in the class and James is very attentive to what they are doing.  This helps to invoke his learning, prompt him to take risks, and shapes the environment to feel less like "therapy" and more like play.  A healthy brain is shaped by love and play.  This is something that Ali and I want to be cognizant  of for James.  We don't want his childhood to be characterized by therapy and work.  Yes, we will do everything we can to maximize his options for physiotherapy to allow for greater independence in his abilities.  But, he needs to also be like every other child and have countless experiences of fun, play and spontaneity.  Conductive Education attempts to balance these two realities.

The next video is the promotional video taken from the Conductive Education website.  Madison, the young girl in the second half of this video, is a CP warrior (as our parent support group calls them) and her path in life has many similarities to James'.  Her mother, Katherine, has written an extensive blog for Madison named "madimoves.com". It was through reading this blog, and the wealth of commentary and information in it about her daughter living with cerebral palsy, that was a key factor inspiring me to also begin this blog for James.  If you have time I highly suggest reading through her blog.