There are a number of therapies available for our children. They offer ways to stimulate and help them explore the world they live in.
Music therapy is an interactive, primarily non-verbal intervention. The purpose of music therapy is to encourage the individual to explore and enjoy the creative process of making music.
It provides a process through which clients can express themselves, become aware of their feelings and interact more easily. Music therapy can provide new insights into a client’s functioning. In music therapy sessions, interactive music is spontaneously created by the client and therapist. The client does not need any musical training or experience in order to make use of music therapy.
The aims of music therapy are primarily non-musical, and are determined by the needs of each client. Typically they might include:
- Developing communication and creative expression
- Raising self esteem and confidence
- Encouraging attention and general motivation
- Supporting emotional well being
- Reducing stereotypies and encourage functional hand use
- Improving gross and fine motor skills
- Offering a space for relaxation
The music therapist facilitates communication through the music, and is skilled in encouraging the individual to play using a variety of percussion and tuned instruments including electric guitars and keyboards.
The therapist supports the music with improvised accompaniment thus contributing to the overall development of an individual. Sessions may also include activities that encourage the use the whole body as well as the introduction of music technology such as Beamz, Skoog, SoundBeam, Midicreator and the Ipad.
During a music therapy session I want to be able to contribute to the development of a relationship that can explore and seek to understand the inner world of the client. Through an awareness of the individuals needs a difference can be made and by using practical music making communication can be achieved.
The use of improvisation within this therapeutic relationship can offer an outlet for emotional expression whilst the use of familiar songs opens up opportunities for choice making and turn taking. Each session is tailored to the needs of an individual and may be very free and exploratory or in some cases, more directed. After all, the ability to appreciate and respond to music is a quality inborn in all of us.
Written with thanks by Cindy-Jo Morison, Principal Music Therapist & Music Therapy Advisor to Rett UK
HCPC Registration No. AS07985 – email@example.com
Eye Gaze technology is not a new concept. However, it was previously thought that children with CDKL5 would not be able to access such a system.
Mostly due to their developmental delay and also a lot of children and adults living with CDKL5 have some degree of vision problems and/or cerebral visual impairment.
Unlike Rett Syndrome, a condition closely related to CDKL5, these individuals do not have the intensive eye interaction that is seen in girls living with Rett.
However, with the improvement of the availability of Eye Gaze Units in Specialist Schools in the UK, more children with CDKL5 are having the opportunity to try Eye Gaze, even if it is only timetabled for one lesson a week.
Although evidence to support the use of Eye Gaze technology for communication purposes is small, there are children who are able to communicate using these technological devices. It should not be assumed that your child cannot learn to use it to communicate and learn.
Even if they are not able to make choices, if the system is able to track their eyes then there is no reason why Eye Gaze should not work for them. Our society is geared for allowing disabled individuals to have choice and independence, and by allowing independent play on an Eye Gaze computer, this promotes well-being, self-esteem and quality of life not only for the child but also for the family.
Not wanting to re-invent the wheel by producing a highly specialized document for CDKL5, we are grateful to Sally-Ann Garrett, a now retired Speech and Language Therapist, for allowing us to use her document called “Ready or Not”.
Although geared around Rett Syndrome, it is relevant to children and adults living with CDKL5. It can be downloaded here and can be shared with your speech and language professional or school.
“As a family, we are over the moon with how well Megan is doing on the Eye Gaze. Our local SALT had decided that it wouldn’t be suitable for Megan. We are so glad that she is proving them wrong. We accept that she may not progress onto the communication side of it, which she would need to do for there to be any chance of funding from them. If, all she can do is play games, that is fine by us. As far as we are concerned, this is a form of communicating. The videos we have taken speak volumes. She is doing more than we ever thought possible and she gets so much from it as well.” ???? Megan’s mum.
What is Spider Therapy?
Spider Therapy is an intense physiotherapy treatment approach which was originally developed in Poland. It involves suspending the child in the centre of a universal exercise unit (UEU) by using a number of elastic bungee cords of different elasticity.
These bungee cords are attached to specific points on a special belt around the child’s waist, forming a unique spider web around the child, which provides them with essential support.
This unique suspension allows the child to move independently while controlling their movements with greater precision and ease, as well as strengthening parts of the child’s body which are affected by CDKL5. Therefore, the spider will help to promote independence with security.
How will this help children with CDKL5?
Main physical impairments experienced by children with CDKL5:
- Motor planning difficulties (apraxia)
- Motor co-ordination difficulties (ataxia)
- Hypotonia (decreased muscle tone)
- Hypertonia (increased muscle tone)
- Dystonia (fluctuating levels of muscle tone)
- Muscle contractures causing reduced range of motion
- Poor postural alignment (potentially influenced by scoliosis)
- Reduced body awareness (proprioception)
Spider Therapy will enable the child’s therapist to:
- Implement a variety of recommended exercises in any chosen position;
- Develop and practice a variety of activities of daily living in a safe environment
- Isolate, stimulate and strengthen specific parts of the child’s body and/or selected muscle groups that need rehabilitation in a controlled manner
- Reduce the level of the child’s pathological movements
- Improve the child’s stability, balance and co-ordination
- Improve the child’s body alignment and their awareness of their body parts (proprioception) in different functional positions and movements
- Improve and develop voluntary movements
- Improve the performance of the child’s vestibular system
- Improve the child’s spatial awareness
- To teach children with visual impairments how to move and orientate themselves in space (gravitational orientation)
In the UK many there a number of families that are currently using this type of therapy with their children with excellent results. The pictures are of little Evie she is living with CDKL5. The therapy centre which is shown is based Essex and for further information please visit www.kidsphysio2u.co.uk
There is also another centre called the footsteps centre which is based in Dorchester-on-Thames, near Oxford in the UK. The therapy offered at Footsteps is slightly different in that the children does not wear a suit, but the child is supported more fully by a large number of bungee cords. For more information please visit www.footstepscentre.com
“Amber had her first session at Footsteps in 2012 at the time she was using her Rifton Pacer, was still harnessed in it. Within a month, after the therapy, she was no longer harnessed and would push the Pacer to mobilise around school. Within another month, she was no longer using the Pacer, and was walking holding a helpers hand. She had another block session in September 2012. Where we are today, May 2013, Amber is now taking independent steps. She can walk about 100 yards on her own. Not only has her mobility improved with this therapy, but her awareness of the world around her; her vision as she has to look where she is walking to; her ability to make choices – if she wants to go to her bedroom or have a walk, she will just get up and go! Life has changed so much in the time since her first session, we never thought we would get to where she is today, it certainly is making life a lot easier and the hard work has certainly paid off.”
Carol-Anne, Ambers mum
This post has been kindly written for us by Liz Beattie, a Speech and Language Therapist.
Type “Intensive interaction” into Google and you will find page after page of links to definitions, descriptions and videos that will give you are far better understanding of the theory and practice of intensive interaction than I ever could in a short post. Instead I will attempt to convey the enthusiasm that I have for intensive interaction as both a learning tool and probably more importantly, a fun and rewarding activity for you and your child.
I have even included a couple of links at the end of the blog to save you the trouble of doing the typing.
Firstly, you are probably doing intensive interaction already. As with most truly powerful therapy techniques intensive interaction is based on behaviours, which are naturally occurring between parent and child.
Unfortunately because they are natural they are often seen as “messing around” or “playing” and are undervalued massively by parents and professionals alike.
Intensive interaction is communication in its purest and most inclusive form. The constraints of formal communication such as speech, symbols and sign are stripped away and the nonverbal, preverbal or unintentional communication left, allow two people to relate to each other on a basic human level.
Professionals and parents, be prepared to surrender your role as expert or teacher, as unlike most other therapies, you aren’t imposing formal speech, sign or symbol on the child.
You are learning the language of the individual and they are in charge! If all that sounds too hippie and touchy feely for you, I would recommend that you go to the links provided below as they will detail the many studies that show that intensive interaction has a positive impact on the people with whom it is used.
In my personal experience as a speech and language therapist of 20 years using intensive interaction has been that I have never met a child whose communication skills have not been enhanced through using it.
The opportunity to ‘do’ intensive interaction is a privilege and a joy. Here are some hints to make it successful:
• Give yourself time; many individuals with complex needs require time to process sensations and their reactions may be delayed, unexpected and small. A video camera or iPad can be your greatest tool, it may be only when you review the video of your time together that you recognise that the person has been reacting, initiating or even turn taking however it went unnoticed at the time because they occurred outside the ‘normal’ time frame of an interaction.
• Time will give you opportunity to truly observe; by tuning into another’s being, notice I use the word ‘being’ rather than ‘behaviour’. That was deliberate as behaviour implies something overt. Many people without formal communication are very passive and interacting with them requires being aware of heart rate, breath patterns or blinking.
• Finally imitate. Imitation is the most powerful communication tool you have. By imitating you are handing over control to the other person, they take the lead, become the initiator, the teacher, the powerful one. This must be an amazing feeling for someone who is often a passive recipient of care, communication and support.
Finally intensive interaction is just plain fun a wonderful time that is all really about connecting with someone you want to be with and who wants to be with you.
For a more detailed visual explanation Matthew Laurie, from www.mattlaurie.com has adapted his Intensive Interaction Essentials Engagement Profile Explanation graphic for us to reflect the parent/child relationship. Its great because it shows step by step what communication is, and what to look for. This is an “essential” chart when reading this post, but also in what to look for in pre-verbal communication. Click here
By Jonathan Graves
M.Ed., cTVI, CATIS
Vision Intervention Specialist
Visual impairment generally refers to diminished sight, and it’s easy to assume that vision problems begin with the eyes. However, the eyes are just the first part in a complex visual system that also includes many parts of the brain: the optic nerves, optic tracts and optic radiations, (nerves relaying visual information from the eyes to the brain,) and the visual cortex (the part of the brain that converts light viewed by the eyes into meaningful images.) This then allows us to use sight in everyday activities.
What can a child with CVI see?
The culmination of current research suggests that children with CVI tend to exhibit a collection of ten visual behaviors, first synthesized by Christine Roman, Ph.D. in her instrumental book Cortical Visual Impairment: Assessment and Intervention. These ten behaviors may be present to varying degrees, and they help paint a picture of the visual constraints that children with CVI may be experiencing.
These behaviors tend to include a preference for certain colors (often red), and objects that are moving instead of held still. Children with CVI may demonstrate a delay in looking at an object that is presented to them, and may tend to look at an object more when it is off to the side.
Children with CVI tend to avoid highly visually complex images, such as patterned objects or an array of toys. Instead, children may prefer to look at single objects in isolation. Since the complexity of the human face may be overwhelming, children with CVI often have trouble looking their parents in the eye.
They may prefer to look at lights, or blank visual fields. They have more difficulty interpreting new toys or objects, preferring to look at familiar things. When attempting to use vision to guide their reach, children with CVI may look at a desired object, decide to reach for it, then look away from the object while reaching for it.
Diagnosis for CVI includes multiple factors, and is best made through the coordinated effort of medical and vision professionals. There are three strong diagnostic components that should be considered together to best conclude the presence of CVI.
These include: a history of neurological trauma, an ophthalmological report that does not accurately describe the child’s apparent level of visual function, and a careful assessment of visual function, particularly identifying the ten CVI characteristics. The CVI Range assessment, administered by a professional trained in best practices in CVI, is the gold standard of assessment.
How can a child with CVI improve their vision?
Once a child’s visual functioning has been determined through assessment, a vision specialist can develop specific, individualized interventions that target this child’s present levels of function.
These interventions build on the objects and material properties the child is familiar with. As more and more CVI specific activities are developed for the child, the vision specialist can help design a “CVI Schedule” for parents to use at home.
This schedule provides recommendations and accommodations to parts of the child’s existing daily routine, so that looking, identifying, reaching, and interacting can be incorporated throughout the day.
As the child is encouraged to use their vision during functional activities, they make new neural connections which improve the way they see.
Through careful adaptation of the CVI schedule to accommodate new visual skills, many children progress from exhibiting very few visual skills, to recognizing and interacting with objects, even demonstrating the visual function needed for print literacy.1
1 Roman-Lanzy, C. A., & Lanzy, A. (2010). Research report: Outcomes and opportunities: A study of children with cortical visual impairment. Journal of Visual Impairment and Blindness,104(10), 649-653.
By Jonathan Graves
M.Ed., cTVI, CATIS
Vision Intervention Specialist
Cortical Visual Impairment is the most prevalent form of visual impairment among children from developed countries.i CVI is unique among visual impairments because it is one of the few conditions that can actually improve with the right assessment and intervention.ii Because it is a brain-based neurological vision impairment, CVI improves when a child has ample opportunity to view meaningful objects that are optimized for the child’s current level of visual function and visual characteristics.
Developing the CVI Schedule
Once a child with CVI is assessed by someone trained in the CVI Range and they receive a Range score, the real work begins. The CVI schedule is a list of activities and routines that happen throughout the child’s day, and that could include a visual element. For each activity, the CVI professional helps develop modifications to that activity based on the child’s CVI Range to encourage the child to use their vision when they might otherwise not be able to.
Parents should play a large role in creating the list of activities in the child’s routine, and describing how these activities work at home. When the routine begins with the family, there is a greater likelihood that accommodations made by the vision professional will be implemented and successful.
Begin with a list of typical activities that are already part of the family’s day. These may include a wake up routine, toileting, choosing clothes, having breakfast, playtime, reading activities, riding in the car, home therapy activities, bath time, the evening meal, visiting family members, and the bedtime routine.
Here are some guidelines for creating a CVI Schedule:
- Divide the day into four parts, (Morning, Midday, Afternoon, Evening) and target two activities in each part of the day, for a total of eight activities to start with. The vision professional can help develop additional schedule activities as the daily routine and the child’s vision evolve. Begin with a manageable number of activities to target with accommodations, adding more when the routine feels comfortable and familiar. The goal is to create accommodations for as much of the child’s day as possible. Children never turn off their vision, so the more opportunities they have to make direct eye-to-object contact with meaningful objects, the more their visual pathways are reinforced.
- Don’t change what you do – just change how you do it. Sometimes all a child needs to see a familiar object are a few subtle changes to how its presented. Strategies can include: Present a toy against a black backgrounds to limit complexity, Wait up to thirty seconds or more for the child to turn towards it or reach for it, Holding the toy within the child’s preferred visual field, Incorporating a small amount of movement into the object, Adding light to the object or Allowing for silence while the child works to process what they see.
- Allowing for silence while the child works to process what they see. There are ways to adapt the visual environment without remodeling the whole house. Create a visually quiet space using a black tri-fold board, or hang a small black curtain on a rod to provide a black background. Place this behind you during visual tasks, and slide it out of the way when you are finished. Decrease visual complexity by lowering the main lights and adding light to the object with a flashlight or flexible task light. Turn off the TV or music in the room, and ask family members to stay quiet during looking tasks. Provide language and praise when you introduce the task, and several seconds after the child stops looking. A “black out” tent, can help create a pop-up low complexity space for vision tasks, so that visual clutter in the room does not interfere with the child’s visual processing.
- Share successes and concerns. Talk to your CVI professional about activities that work well, and where there are still challenges. Sharing video of the task is very helpful, and the CVI professional may be able to see opportunities to adjust the task to make it more successful. Your child’s successes form a foundation of mastered skills that new activities can be built upon.
- Show the routine to everyone who is meaningful in the child’s life. As your child develops new visual skills, the whole family can get involved in helping your child to see the world around them, if they understand how to use the strategies that help make your child successful.
- Expect improvement. Children with CVI are in a unique position to make gains in their vision through careful assessment and thoughtful intervention. This happens when members of the child’s team believe that the child will make improvements, and nurture those improvements as they happen.
Parents make incredible Therapists
Vision professionals contribute immensely to a child’s visual journey by modifying toys and activities, refining presentation techniques, and tracking progress through assessment. However, the work done at home in the family has the biggest impact on improvement of vision for children with CVI. There are several reasons for this:
- Parents know their children best. They understand what their children prefer and what they avoid, when they are tired and when they are hungry. More valuable than any IEP or therapy plan, parents are armed with goals and dreams for their children which support them as they push through perceived limitations. When children make even the smallest progress, parents celebrate it with the memory of how far they have come and expectations of how far they still will go. A CVI schedule built around a child’s preferences, respectful of their limitations, and strengthened by expectations of growth and development is far more likely to be successful.
- Parents design the family routine. Just as each child is an individual, each family operates in its own unique way, and parents are responsible for these decisions. From setting the morning schedule to choosing meals and mealtimes, parents are constantly balancing the needs of every member of the family.
- Parents are the observers of challenges and opportunities. Parents notice when children are having a hard time viewing or participating in a task. An accommodation that worked at school or in a clinic might not work at home, and parents play an important role in helping to figure out why. Similarly, as parents develop a better understanding of the factors that help their children see, they can take advantage of opportunities to introduce new objects, make connections between one activity and another, and reinforce the progress the child has already made.
- Parents can support vision more often, and more effectively. Children with CVI make progress when they are presented with visual targets which accommodate their current level of function. Direct eye-to-object contact, and visually guided interaction is the best way to make progress. Children don’t turn their vision off in between therapy sessions. They need quality opportunities to use vision while engaged in meaningful activities throughout their whole day. Parents are uniquely equipped to provide these interactions from the moment the child wakes up to the time they go to bed.
- Parents and vision professionals are partners. By adding the overlay of CVI to a child’s routine, parents help to facilitate great progress in their children. Throughout this process, the family should have ongoing support and consultation from their child’s CVI professional. With a strong, open relationship, therapists and families can brainstorm solutions to challenges, talk about difficulties, and celebrate successes. Through collaboration, the CVI schedule can be inspiring, rather than overwhelming.
The expectation of improvement is the hallmark of CVI.– Ellen Cadigan Mazeliii
iKong, L., Fry, M., Al-Samarraie, M., Gilbert, C., & Steinkuller, P. G. (2012). An update on progress and the changing epidemiology of causes of childhood blindness worldwide. Journal of American Association for Pediatric Ophthalmology and Strabismus,16(6), 501-507. doi:10.1016/j.jaapos.2012.09.004
ii Roman-Lantzy, C. (2007). Cortical visual impairment: An approach to assessment and intervention (First ed.). New York, NY: American Foundation for the Blind Press.
iii Cadigan Mazel, E. (2014, December 12). Expect Improvement! Retrieved July 31, 2018, from https://cviteacher.wordpress.com/2014/12/12/expect-improvement/
By Jonathan Graves
M.Ed., cTVI, CATIS
Vision Intervention Specialist
I am fortunate to be part of an amazing network of parents and professionals devoted to improving the lives of children with CVI, called the Pediatric Cortical Visual Impairment Society. Many parents are willing to share their experiences with others who have just received a diagnosis of CVI through online forums, such as the Cortical Visual Impairment Awareness Facebook group. One of the most common questions in this group is a variation of this question: “I just found out my child has CVI. Here is there story. Will they improve?” The expectation of improvement is one of the guiding principles of CVI, and with the right assessment and intervention, improvement is very likely. I think something parents are really thinking about when they pose this question is, What does the future hold for my child once their vision improves?
CVI is assessed using The CVI Range, which considers the child’s visual skills in light of ten visual characteristics associated with CVI. The result of this assessment is not a single number, but a range of two scores that are determined by thinking about vision from two different perspectives—both comparing all characteristics at a given score, and considering the impact of each characteristic independently. This helps ensure accuracy in scoring and provides more opportunity to capture information about the child’s behavior. The Range scores are further divided into three Phases, which can help parents translate the numerical score into a plan of action. We use these phases to develop interventions that are just at the child’s emerging level of vision, and also think about the skills we think they can acquire next.
In Phase I, children have a score of between 0 and 3. In this phase the child primarily does not use vision as her method of accessing the world, and opportunities to use vision have to be adapted by ensuring the viewed object has adequate light and color, reducing the complexity of the object and the background, and providing enough time for the child to notice and process what she is seeing. The focus of intervention in Phase I is purely on building visual behaviors, and supporting the child as they begin to understand they can use their vision to learn more about the world. I also think of this as a time to build the child’s internal “Google search engine.” She is learning that some objects she sees far more frequently than others, and that those familiar objects are important to her life, such as her spoon, her bottle, and her mother’s face. These memories will lay the groundwork for continued visual development, so that she can recognize these most important objects even if they have a slightly different shape, are viewed from a different angle, or they are crowded by other objects in the background.
As the child’s vision improves, and her Range score increases to between 3 and 7, she enters into Phase II. In this phase, she is realizing that the can interact with objects around her by reaching for them and moving towards them. She is also learning what will happen when she interacts with toys and activities. Within Phase II, children establish a wide range of visual preferences, and they begin to understand the function of things around them, beyond just knowing their shape. Children begin to engage in comparative thought, considering how some objects are similar and different based on their features and function. We support this by adding verbal descriptions of the salient visual features of things we present, so that the child has more information to work with as they make memories about what they see. For example, a sippy cup and a bowl are both round containers that hold food items, but the curvy handles of the sippy cup mean it should be picked up and used for drinking. Even if the child doesn’t know what is inside the shorter bowl without handles, it is probably best approached with a spoon, a fork, or fingers. By teaching the salient features of these containers and helping the child compare them, we are giving her information about what to expect as she begins to eat. This explicit emphasis on how things function helps support the cognitive development that occurs implicitly for children who are not visually impaired.
When the child’s Range score moves to 7 and above, they are in Phase III, in which they are continuing to refine visual behaviors. Children in Phase III use their vision consistently throughout most of the day. They are constantly comparing what they see to what they already know, and can process enough visual complexity to read print as a literacy medium. To the casual observer, these children initially may not even seem visually impaired. However, they still need an incredible amount of support. Bright color is still used the draw their attention to important features of things they are learning in school, and backlit displays (such as a tablet or computer screen) add light to two-dimensional images that would otherwise be viewed on paper. Because children in Phase III use their vision for so many hours a day, they are very susceptible to visual fatigue and feeling overwhelmed, which may look like frustration, apparent boredom, or disinterest, so they should have many opportunities to take visual breaks throughout the day. While some characteristics such as movement and latency may “take a backseat” in this Phase, others such as complexity, distance, and novelty will still need to be accommodated for through careful planning with the student’s teaching team. For example, children in Phase III may be able to work on a math problem, but have more success when colored highlighting helps them view the rows and columns of the problem. They may be able to write responses in a “fill in the blank” worksheet, but will stay organized if words lines of text are spaced far apart, and highlighting indicates where the “blanks” are.
The most important thing that sets CVI apart from other conditions is that children with CVI have an expectation of improvement. For many, many children who receive appropriate assessment and interventions tailored to the 10 characteristics, parents report dramatic improvement in visual function. In their chapter on Neuroplasticity, in Vision and the Brain, vision researchers Catteno and Merabet write:
…It is highly likely that in children with damage to the visual brain, training that is carefully matched to the child’s profile, and that the child enjoys, wishes to join in, and is spontaneously driven to complete, will enhance intact functions and redeploy other higher functioning brain areas to adapt additional compensatory abilities through neuroplasticity (Cateno and Marabet, in Lueck and Dutton, 2015).
In other words, when children are given motivating activities that are accommodated to their current level of visual function, their brains can change to improve how they process what they see. Children who routinely present with little to no visual attention without significant accommodations can gradually increase the complexity of things they are able to view, while decreasing the degree of accommodations they need to have visual access. For families of children in Phase I, the prospects of getting through a school day primarily on vision may seem far off, but this has been the reality for many children with CVI who have progressed through the Range. Improvements in vision create access for children to a world of cognitive and motor development that makes what seems impossible not only possible, but likely. This happens best when accommodations for vision, based on a CVI Range assessment, are integrated into many activities across the whole day.
Roman-Lantzy, C. Cortical visual impairment: An approach to assessment and intervention (Second ed.). New York, NY: American Foundation for the Blind Press, 2018.
Lueck, Amanda Hall, and Gordon Dutton. Vision and the Brain: Understanding Cerebral Visual Impairment in Children. American Foundation for the Blind Press, 2015.
By Lindsay Mawdsley
BHSc (OT) PGCert(OT)
Senior Occupational Therapist
Sensory integration, feeding and behavior specialist
We are sensory beings. No matter which way you look at it, we need our sensory systems to make sense of ourselves and the world around us. So how does this differ to a person with complex needs? Well, it doesn’t. A person with complex needs still uses their sensory systems to make sense of their world. But it’s HOW they do it which might be different.
Each of us has 8 different senses which we use to register, process and respond to stimuli. Those senses are taste, touch, smell, sight, hearing, proprioception (body awareness of muscle and joint movements), vestibular (changes to balance and equilibrium) and interoception (awareness of internal sensations such as hunger and body temperature).1
Many of the children we see experience difficulties with their sensory processing as a secondary symptom(s) to their diagnosis.
Let’s look at some recent findings which give us insight into sensory processing within complex needs:
- Sensory processing difficulties manifest across all levels of intellectual developmental disabilities. Children with mild and severe intellectual disabilities experience the most sensory processing difficulties.2
- The somatosensory system (touch and body awareness) is impaired in neurodevelopmental disabilities. These impairments may be over- or under-sensitivity to touch or poor touch discrimination associated to motor deficits amongst others. These somatosensory difficulties are closely related to problems with social, communicative and motor development.3
- Children born prematurely show atypical sensory behaviours with auditory, tactile and vestibular processing most likely to be affected.4 In fact, 39% of all children born prematurely have atypical sensory needs.
- Children with cerebral palsy present with disorders of sensory processing compared to typically developing children.5
So, we know through the research that children with complex needs have sensory processing differences. As practitioners trained to support children with complex needs, it is our job to look at how a child can make sense of their sensory world alongside their medical diagnoses.
We are the detectives who find out how they respond to different input and how they are communicating these responses to us. This isn’t always an easy job, especially for those children who are non-verbal. Therefore, it is important to complete a thorough assessment and for the therapist to get to know the child and their family. It’s also why we are so focused to set goals with the families we support – we need to work together as a team.
Once we know more about the child and their sensory needs, we can use this information to ensure a more regulated daily routine and productive therapy sessions. If we notice a child is more wriggly or whiney than usual, and we know that they are sensitive to bright light and loud sounds, we will adjust the therapy room by dimming the lights and removing toys which are too loud and bright.
If we know a child becomes sleepy after the car ride to therapy, we might use some fast movement and upbeat songs to alert their senses for optimal attention and learning. This information should also be discussed with the family so they too can be sensory detectives to better understand their child’s sensory needs and therefore behaviours.
Sensory processing is just one piece of the puzzle. It is very important to consider all other areas of influence – physical and cognitive ability, social communication, the environment, behaviour management, general health and wellbeing.
If you have concerns about your child’s sensory needs, please get in touch with the team at High Hopes Dubai to book with one of our Occupational Therapists.
- Sensory Integration Network (UK & Ireland). What is sensory integration? https://www.sensoryintegration.org.uk/What-is-SI. Accessed 21st February 2019.
- Engel-Yeger et al (2011). Sensory processing dysfunctions as expressed among children with different severities of intellectual developmental disabilities. Research in Developmental Disabilities. Volume 32, Issue 5. https://doi.org/10.1016/j.ridd.2011.03.005
- Cacsio, C.J. (2010). Somatosensory processing in neurodevelopmental disorders. Journal of Neurodevelopmental Disorders. Volume 2. https://doi.org/10.1007/s11689-010-9046-3
- Wickremasinghe et al. (2013). Children born prematurely have atypical sensory profiles. Journal of Perinatology Volume 33, pages 631–635. https://www.nature.com/articles/jp201312
- Pavao et al (2017). Sensory processing disorders in children with cerebral palsy. Infant Behavior and Development. Volume 46 pages 1-6. https://doi.org/10.1016/j.infbeh.2016.10.007
By Mary McCollum
What is Aquatic Therapy?
Aquatic therapy is treatment provided by an occupational therapist (OT) or a physical therapist (PT) in an aquatic environment. It is an alternative to land-based services and utilizes an aquatic environment for skilled treatment, and can be used in place of or in combination with traditional therapies. The inherent properties of water are utilized to enhance treatment and provide an environment that is fun, engaging, and motivating when it is being utilized as a therapy medium. Aquatic therapy is designed to develop specific functional skills essential to the performance of land-based tasks.
How does Aquatic Therapy work?
Aquatic therapy, just as OT or PT, begins with an assessment of a child’s skills, abilities, and the family’s concerns. Assessment occurs on land, and is essential to determining if aquatic therapy is beneficial and appropriate for the child as well as if it will support therapy in meeting the family’s goals. Aquatic therapy takes place in a warm-water pool using therapy devices that help in positioning the body and can provide resistance. The child does not need to be able to swim and is not fully submerged during therapy.
What are the benefits of Aquatic Therapy?
Aquatic therapy uses water as a therapy medium for clients that would benefit from partial weightlessness, or the sensation or pressure of water to achieve land based functional outcomes. Inherent properties of water make it an enhanced media for therapy for kids to work on strength, coordination, and provide opportunities to work on self-care goals. Some of the of the benefits that have been seen include:
- Decreased impact on joints – The buoyancy of water provides support during movement.
- Improved motor planning and coordination – Moving in the water requires coordination of trunk, arms and legs. The increased support from the hydrostatic pressure can aid in balance and decrease the fear of falling.
- Increased postural control and balance reactions – Balance and postural control can be challenged in a safe environment.
- Whole body sensory input – Water provides a kinesthetic environment as it surrounds the submerged individual. This provides proprioceptive and tactile input with movement.
- Promotes relaxation – Hydrostatic pressure provides a constant and consistent squeeze like a compression sock or vest and is calming to many people just as being swaddled can be calming for babies. Constant pressure has been seen to decrease the brain’s system of arousal and therefore can be beneficial for individuals who are tactilely defensive.
- Body/positional awareness – The resistive properties of water (such as hydrostatic pressure) provides information to our body about our own movements through our tactile and proprioceptive system, which can increase body awareness.
- Increased active movement of weakened limbs – Buoyancy helps to decrease the forces of gravity, so that less effort is required to move a limb through the water.
- Strengthening – Buoyancy can also be used to challenge both weak and strong muscles, offering resistance through devices such as webbed resistance gloves or foam weights.
- Fun and engaging environment – Being in the water is fun, and kids enjoy splashing and playing while therapy is occurring.
- Increase range of motion (ROM) – Warm water can relax tight muscles allowing for more movement
- Reduce spasticity – With muscles relaxed and ROM increased, resistance from the water allows for strengthening, and can provide a great medium for therapists to begin reducing spasticity and utilizing neuroplasticity to ensure positive functional outcomes.
- Increased breath control – The hydrostatic pressure of the water provides resistance for our respiratory system allowing for strengthening while submerged. It can also be fun to blow a toy that floats across the surface of the pool or blow bubbles with a straw that is submerged.
What can benefit from Aquatic Therapy?
Research has shown that there are many individuals that can benefit from the use of aquatic therapy. Below are some diagnoses that have been shown to benefit:
- Cerebral Palsy
- Developmental Delay
- Motor Challenges
How can I find out more?
To find out more about aquatic therapy, you can reach out to Mary McCollum at firstname.lastname@example.org, or call High Hopes in Dubai at +971 04 333 3509.
1 Cole, A.J. & Becker, B.E. (Eds.). (2004). Comprehensive Aquatic Therapy. Philadelphia, PA: Elsevier Inc.
2 Darcy S. Vonder Hulls, Lisa K. Walker & Janet M. Powell (2009) Clinicians’ Perceptions of the Benefits of Aquatic Therapy for Young Children with Autism, Physical & Occupational Therapy In Pediatrics,26:1-2, 13-22, DOI: 10.1080/J006v26n01_03
3 Dorval, G., Tetreault, S. & Caron, C. (1996). Impact of Aquatic Programmes on Adolescents with Cerebral Palsy. Occupational therapy international, 3(4) 241-261. https://onlinelibrary.wiley.com/doi/pdf/10.1002/oti.39
4 Kucher, G.; Moore, K. Rodia R. & Moser, C.S. (2015) Aquatic Therapy for Children, Journal of Occupational Therapy, Schools, & Early Intervention, 8(4), 277-291, DOI: 10.1080/19411243.2015.1113104
5 Lai, C.-J., Liu, W.-Y., Yang, T.-F., Chen, C.-L., Wu, C.-Y., & Chan, R.-C. (2015). Pediatric Aquatic Therapy on Motor Function and Enjoyment in Children Diagnosed With Cerebral Palsy of Various Motor Severities. Journal of Child Neurology, 30(2), 200–208. https://doi.org/10.1177/0883073814535491
6 McManus, B. M., Kotelchuck, M. (2007). The Effect of Aquatic Therapy on Functional Mobility of Infants and Toddlers in Early Intervention. Pediatric Physical Therapy, 19(4). 275-282. DOI: 10.1097/PEP.0b013e3181575190
By Dr. Mike Binet
PT, DPT, PCS, CFMT, BSPTS
Walking the style-bright streets of Saint-Honoré fashion district in Paris, a lighted sign catches your eye. You want to believe those words but, your rational self whispers, “The perfect pair of jeans is born from the thoughtfully attentive hands of a sage-like tailor. A quietly confident professional perseverating on the subtleties of fabric, stitching and the smallest details of fit.” Best wishes in your search for the perfect jeans and not to diminish the significance thereof, we turn to another important question.
How to be an informed consumer of therapies for your child
Children are powerfully unique, impressionable and veraciously changing. Expert therapists value and respond directly to the qualities of each child. Like jeans, there is no “one size fits all” therapy. As the master tailor perseverates on “fabric, stitching and the smallest details of fit”, a strong therapist invests in understanding your child’s path of development, medical history, current presentation and the important insights you carry into the room as parents.
Quality therapy begins with a thorough review of your child’s medical record
It is vital the clinician understand details of diagnosis (if present), past procedures, results of tests or imaging studies and response to previous intervention. These inform how to move forward, including potential risks of treatment, prognosis and what therapeutic tools may be of greatest benefit.
Treatment grows from formal assessment
To effectively plan the intervention and accurately assess progress, the clinician must take baseline measures. These include the measurement of body structures, component abilities and whole functional skills. Baseline measurement establishes a reference from which to identify progress, or the lack thereof. Children grow in a spiraling and often non-sequential pattern. The challenge and ultimately the key to responsible care is differentiating functional gains attributable to natural growth from gains reflecting therapeutic intervention.
Quality functional tests are designed to be objective because people are not
Best intentions aside, the talented clinician respects that bias is an innate side effect of having a human brain. Facilitating true functional gain in the life of a child requires objective measurement in the form of norm-referenced or standardized testing. Measurement tools are matched to specific populations of children and rated for the strength of information they produce. A reputable therapist demonstrates the functional benefit of intervention through change reflected on initial and subsequent measurements.
“Evidence-based” care is the best care
Literally, that’s what the term means. Clinical research simplifies to the idea that thousands of smart and compassionate people went to a great deal of trouble to identify the most beneficial tools for your child. Novice clinicians often wrestle with new evidence contradicting familiar therapeutic tools. Top therapists function like scientists, dynamically adopting techniques supported by the best available evidence. The demand to rapidly change practice in response to new evidence can bruise the therapist ego. Therefore, experts consciously aim to practice free from ego, instead focusing on the greatest benefit to your child.
The body of therapy research is young and rapidly growing
Quality peer-reviewed evidence provides some good answers but many questions remain. Research combines with the clinician’s expertise and the unique values of each family to form the three fundamental pillars of clinical decision making. The most evidence-based and experienced therapist serves the needs of your child only to the extent that he or she values your input. Simply, your child’s therapy path begins with your goals and moves forward with your perception of progress.
Communication is the vehicle to comprehensive care
The clinician’s communication reflects his or her cognitive approach to your child’s care. As you are the central members of your child’s therapy team, a strong therapist is open in offering and receiving information with you. He or she demonstrates knowledge of your child’s unique condition and willingness to discuss current evidence supporting the approach to your child’s care. Exchange of information extends from your child’s therapy team to his or her greater medial team and culminates in comprehensive care. Comprehensive or holistic care reflects shared ownership in the success of your child.
It is appropriate to expect excellence from your child’s therapy providers and worth the effort to seek out clinicians utilizing best practice guidelines. On the polished doorstep of that Parisian boutique, remember, you will end up wearing the jeans. It is worth the effort to find the perfect fit.