Episodes listed in reverse chronological order

LIVED EXPERIENCE - AN INSIGHT ON THERAPY, THE F-WORDS, RESEARCH AND EVIDENCE BASED PRACTICES AND WHAT KIND OF IMPACT IT CAN HAVE.

Reflections on this episode

What a wonderful episode that brings to life so many of our conversations from researchers we spoke with in 2022. In this episode, we framed our conversation around the F-words, a wonderful framework that was relevant and meaningful for Emily.

What really struck me about this conversation was how vital organisational and communication skills are. For Emily, thinking ahead for her day with regards to mobility options, balancing therapy, school work, and friends is important to ensure she has as many opportunities as possible to be involved in all aspects of her life. 

Inclusion within her community of family, friends and incidental bystanders is fuelled by her ability to communicate. This means communicating about her disability as well as what is important for her as a person. These were the active ingredients to being involved - that wonderful part of participation where an individual is truly part of their world.

Of course, Emily’s story is hers, beautifully unique and driven by her hopes and dreams for the future. However, we can still relate these key thoughts to the lives of all of the children that we work with. When we asked her, how can we get children to be involved? Her answer - just ask them! What do they want to do? 

For an 18 month old where verbal communication may be limited, asking them might mean knowing what puts a smile on their face, what gives them joy and has them asking for more! If it is playing with a toy with lights and a specific song - lets make sure that toy is adapted to their needs at the time. 

It may be able to be played as is but the seating might need to be thought through, or perhaps the volume is too loud - is there a way to reduce it? Does it need a switch? Do we need to adapt it for a child with CVI? If the child is able to play with it, with their family and siblings and are enjoying it, we have essentially thought about the F-words whilst providing an opportunity to be involved right from the beginning.

Organisation is another skill that we can be thinking of straight away. As therapists, we can start talking to families about different mobility options, helping to plan what the day or week might look like. Helping to balance therapy, with group play, outdoor play or simply rest just like Emily talked about with her gym rest days. I can’t help but to think that if we can help families with this right from the beginning, we can set them up to live an inclusive and enjoyable life.

AN EVIDENCE BASED APPROACH TO HEALTHY EATING

Reflections on this episode (Dr Pool)

Dr Kyla Smith is a paediatric dietician with a passion for helping families to feed their children well without the overwhelm. Dr Smith has a PhD in childhood weight management and 15 years experience working with restrictive eaters both in her clinic and online programs. Dr Smith has developed a suite of online programs and resources to help families feed their children with confidence. 

As the first paediatric dietician on our show, I must say, what a way to start! This episode sets the foundation for a lot of future conversations and I would encourage you to share this episode with your friends and family! 

The concept of the “division of responsibility” is one of great importance and significance in our current context. “You provide and they decide” is so valuable in every household and extends to children with neurodisabilities. We know that some children with neurodisabilities have sensory preferences associated with past experiences. In these instances, forcing the issue of feeding a variety of food can be frustrating for all involved. 

Providing choice and autonomy remains relevant. However, it is also vital that if there are concerns with intake and growth that help is sought from a health professional. For some children this may mean dietary supplements that are provided by a clinical expert following clinical guidelines. Dr Smith’s advice to “stay in our lane” as health professionals or well-meaning people in our community becomes very relevant here. Just because we all eat, doesn’t mean we are an expert in providing nutritional advice if children are not eating well to support their growth! It is so important to recognise the biases that we may bring from our own upbringing and experiences and distinguish this from actual evidence based information. 

The overwhelm of information from uncurated sources continues to ring true in this area. To distinguish between evidence based advice and personal testimonial advice is a difficult task. Therefore, seeking expert advice if there are concerns about nutritional intake cannot be overstated.

On a more general note that is relevant to all of us, whether we have children or not is that there is so much power in our language. To learn that a third of adolescents have some kind of disordered eating behaviour was alarming. The commentary from so many sources today about diet culture surrounds us and we need to be more conscious than ever about our language and how we talk about food with each other and our young people. 

For more information on Dr Smith - visit her website 
https://mealtimes.com.au/

PARTICIPATION, BOTH A MEANS AND AN END: A CONCEPTUAL ANALYSIS OF PROCESSES AND OUTCOMES IN CHILDHOOD DISABILITY

Reflections on this episode (Dr Pool)

I just know that you will leave this episode feeling enriched, challenged and inspired. As I said at the beginning of the podcast episode - Christine has a way of making me go away thinking deeply about our conversation. I absolutely love it because it facilitates an opportunity to look at something differently and perspective is always important. 

I love where we landed in this episode as we took a journey through the Family of Participation Related Constructs and its relationship with the ICF. We spoke at length about participation attendance and involvement and in fact, it is not enough to just think about attendance. 

We can be there but were we actually involved? 

Were there accommodations that were affordable and acceptable that enabled meaningful involvement? 

Involvement is so important and we need to think deeply about what this means for the people that we work with. Involvement cannot be assumed as appreciating individual experiences shape how involvement may be perceived - it may look different for different people depending on their context and environment and the fact is, we all have a significant role in promoting participation involvement.  

What I loved the most was the notion of thinking about participation right from the beginning - as a child first enters our services. We need to think of it more as a means. I think that our language for so long has been about participation when the child reaches adolescence rather than thinking about it when they are just 6 months old. 

Inherently, I think that so much of our therapeutic interventions have been based on treating the impairments at the body structure and function level first. After that, once impairments are treated then we progress to activity limitations and after that, we move onto participation. This approach makes participation the end yet, we are challenged to think of it as a means. If we view participation as a means - we are valuing quality of life - life that is meant to be lived and enjoyed, rather than spending a life aimed at “fixing”. 

Our language of “fixing” a problem has largely come from our training where we identify the impairments that account for the activity limitation and ultimately the participation restriction. This approach, whilst useful to teach students how to identify and assess, is probably where our deeply ingrained need to “fix” impairments has come from. 

Christine mentioned that sometimes, therapists can get in the way of participation and this comment is something that I think we need to linger on. The hours of therapy that is spent stretching a muscle, “fixing” alignment, improving head control in a therapeutic clinical setting removes opportunities for fun and play. Yet, if the context and environment is set up right, we can in fact dynamically stretch a muscle, support upright posture for head and trunk control whilst doing something meaningful and age appropriate. 

We need to stop just identifying things that are wrong within the child and start balancing this with what is in the context and environment that can be addressed instead. 

SOMATOSENSATION AND BRINGING TOGETHER CURRENT SCIENCE AND ANATOMICAL KNOWLEDGE COMBINED WITH SOME PRACTICAL STRATEGIES THAT CAN SUPPORT CHILDREN WITH UNILATERAL CEREBRAL PALSY.

Reflections on this episode (Dr Pool)

The pediatric rehabilitation research unit at KU Leuven, under supervision of professor Hilde Feys, is dedicated to the evaluation and rehabilitation in children with neurological disorders, and more specifically in children with cerebral palsy. 

The main focus of current research is on upper limb function in children with unilateral cerebral palsy. The team studies upper limb function from a clinical, biomechanical and neurological approach. Research methodologies have been developed, including a clinical evaluation protocol, 3D movement analysis and instrumented assessment of mirror movements. 

These methods were also supplemented with brain imaging (structural & diffusion) and non-invasive stimulation to map the neural correlates of behavioral dysfunction and predict rehabilitation outcomes. 

Their current work focuses on the assessment of bimanual motor control, using robotics and instrumented outcome measures. Currently, three PhD-students are working on this large project, of whom Lize Kleeren will specifically focus on bimanual motor control and its relation with the somatosensory system, both from a behavioral and neurological approach.

This is such a great episode that brings together current science and anatomical knowledge combined with some practical strategies that can support children with unilateral cerebral palsy. 

This episode emphasizes the importance of assessment. Somatosensation is a strong predictor for motor outcomes. With this in mind, we need to know the extent of its influence so that we can put together a targeted and adequately dosed intervention plan.

THE PREVALENCE OF AND POTENTIAL RISK FACTORS FOR DEVELOPMENTAL LANGUAGE DISORDER AT 10 YEARS IN THE RAINE STUDY

Reflections on this episode (Dr Pool)

The aim of this study was to estimate the prevalence of children meeting the diagnostic criteria for Developmental Language Disorder at age 10 years in an Australian population sample.  Using the Raine Study data, the team were able to determine the percentage of children who met the contemporary diagnostic criteria at age 10. 

The team also aimed to identify potential risk factors and to assess the magnitude of the relationship between potential risk factors and presence of DLD at 10 years.

This is the first study of Australian children estimating the prevalence of DLD and one of a few that identified the proportion of children with a clinically significant language deficit in middle childhood.

There are some very important takeaways from this research. First of all, the fact that sex was not a predictive of DLD is important. There are so many conditions where it seems to be widely “accepted” that being male is simply a risk factor for language disorders. This places young girls at such a high risk of being missed in critical early detection and intervention opportunities. It is important that people who work with children pay attention to both girls and boys. It is the functional impact of language difficulties that requires attention and a referral to a speech pathologist.

I also loved that there are common themes across childhood research and interventions. Environmental enrichment applies to all children - regardless of diagnosis or condition. If a child does have a condition that causes a delay then the environment is even more important to consider because of its profound influence on skill development. In the context of DLD, we talked about the role of reading books to children on a regular basis, being surrounded by conversation within the home and a healthy environment. 

Providing education at the right time is vital given that the only significant predictor of meeting the criteria for DLD in this study was exposure to smoke in utero at 18 weeks gestation.  Environment matters and education is the vital link in providing a more enriched environment.

CDKL5 DEFICIENCY DISORDER: CLINICAL FEATURES, DIAGNOSIS, AND MANAGEMENT

Reflections on this episode (Dr Pool)

The aim of this review was to synthesize the current knowledge about CDKL5 deficiency disorder - including epilepsy patterns, developmental course, functional abilities and comorbidities. 

The review also goes on to focus on clinical variability within the disorder and new knowledge accruing about genotype -phenotype relationships, differential diagnoses, genetic testing and comparing CDKL5DD with other developmental epileptic encephalopathies at the time of diagnosis.

The paper summaries the evidence regarding clinical management and the current landscape of clinical trials. With CDKL5 Deficiency Disorder being more commonly diagnosed in infancy, it is vital that clinicians have the best available information to provide to families.

This is such an important paper because it brings together current knowledge about this ultra rare disorder. Though there are no specific allied health interventions that have been tested and reported in CDKL5 Deficiency Disorder, understanding the main challenges that children face enables us to draw on the current evidence in childhood neurodisability. 

We can draw on our knowledge about the importance of movement for gut health and respiratory disorder prevention and treatment. When we talk about movement - we are therefore also talking about functional movement guidelines and we have the best practice principles already available to guide us. 

The combination therefore of this paper which provides the current literature and knowledge along with the best practice principles, allows us to provide an evidence based approach when planning treatments for children with CDKL5 Deficiency Disorder.