“ Ask yourself the hard questions. Never stop asking. And allow your answers to change as you do.” – Colin Wright
We love receiving questions from colleagues and all those interested in becoming more sensory informed, working in perinatal, neonatal and early intervention settings.
In bold, is a great series of nuanced questions and observations. They are from an occupational therapist working in an Early Intervention setting. The questions are so thought provoking that it is worth us working through them, point by point.
It is great that we reflect and ask our selves the hard questions. Being a reflective and questioning practitioner is one of the greatest assets we can be for our families. There are few absolutes in our work!
So, let’s begin….
1.I work in early intervention and I absolutely love what I do, but I also am always unclear with what the ultimate goal and expected outcome of early intervention services are.
Comment … We are sharing the expected outcomes for infants and parents from the Pace Early Intervention Service where Lindsay works.
|Outcomes for Infants with Neurodisabilities||Longer term outcomes|
|Are better able to learn when neuroplasticity is greatestExperience increased motivation to learn and decease frustration Make accelerated progress in engaging in early childhood occupations Have enhanced relationships and attachments with parents||Infants with neurodisabilities are better able to engage in skills and occupations of early childhood|
|Infants with neurodisabilities experience fewer health challenges|
|Outcomes for Parents||Longer term outcomes|
|Are better able to identify and understand their own personal needs Learn how best to support their child and how to integrate therapy into daily lifeFeel more confident and empowered as parents Are better able to get what they need Are better able to support other parents||Parents are better able to meet their child’s needs|
|Parents have better mental health, wellbeing and resilience.|
2. In one of your neonatal sections you mention that there are certain red flags you may see in these tiny infants (movement patterns) that would lead you to refer a child to early intervention.
Comment… Additional red flags for referring a child for early intervention include difficulties with parenting co-occupations of, feeding / eating, co-regulation/ self-regulation including sleep, bathing, play, communication (including non-verbal as well verbal communication and comprehension), and relationship/ attachment challenges.
3. I found myself thinking: what can I in early invention do for a child who has CP? I’m not going to stop the CP from existing.
Comment … We cannot stop what has happened or wish away a diagnosis of CP but there are opportunities for support. Neuroplasticity and neurodevelopment is still present to a very significant degree. That a child has CP does not mean that new neural connections will not be made; these will still come about as they interact with the world around them. Making that world accessible to them, attuned to them whilst encouraging active engagement, doing “with” not “to”, will give the best opportunities for development across all areas.
Focusing on what they can do, what interests, engages them will encourage neurology to grow and connect. We want to build the greatest repertoire of movements and skills and a sense of success, and therefore agency, even if this looks a little different to others’ ways of doing.
4. I know I can support the parents in knowing how to position the child and encourage certain developmental and motor patterns…
Comment … Yes we can, but we can also do so much more than this. As an occupational therapist your interest is in the many parenting co-occupations and the occupations of early childhood. Feeding/ eating, nappy changes, sleep, bathing, baby massage. These are all daily activities that are rich with possibilities to promote regulation, connection, communication, sensory experiences and yes, movement patterns all of which can be challenged when an infant has additional needs.
Supporting regulation through co-regulation is the platform for ever more sophisticated self-regulation strategies. Regulation – feeling just right – is essential to our physical and emotional wellbeing and is a precursor to feeling safe and secure enabling us to undertake daily activities with pleasure and venture out to play and learn. This is an area of vulnerability for parents and children with additional needs and so looking to support co-regulation and self -regulation strategies provide a positive platform for development.
When we ask parents in the moment what are their concerns this week, sleep, feeding/eating, regulation issues such as crying, how to sooth and deal with meltdowns are often as common as movement and communication concerns.
5. I guess my question is, do you feel that early intervention is actually changing the developmental course of the child or are we mostly educating the parents to know how to understand and notice and interact with their child?
Comment …We are hopefully doing both. The biggest influence on any child’s development is their parents, both in subtle and obvious ways. Parents provide our first environment, it is through them that a child starts to make sense of their bodies, how they feel and learn about themselves and the human and physical world around them.
We all require attuned parenting to flourish and achieve the best we can. This is also true for children with CP or genetic additions or depletions. For many children with additional needs, this is even more the case as they often spend more time with their parents.
Our therapy then looks to acknowledge and encompass the major new role and occupations parents are undertaking to support, and be attuned to, their child’s physical and emotional needs and development. By supporting parents to feel a sense of competency and mastery, they will gain a sense of change and progression in becoming a parent to this child. In doing this we look to reducing stress for the parents, through empowering them and changing the developmental course of their child.
6. I say this because I sometimes think people refer children to early intervention thinking it will stop the child from having delays but I also know we are not able to ‘fix’ children although is this not what everyone is looking for..
Comment… We look to put our feet in the shoes of the parents – what would you want? They are likely in a state of high stress, in flight / fight. A positive is if they are out there looking for ‘a fix’ (help and support for their child), they are not in shutdown.
Acceptance that something is going to be different from expectations is hard for everyone and never more so than the expectations you had for your child and your life going forwards. Parents are scared and lost. Most have not heard of the diagnosis their child has been given, they don’t know what to do or where to go. Being prepared to hold this anxiety, these big feelings with them, this is therapy. Sometimes ‘just’ listening is the most powerful thing we can do. The challenge is often us getting comfortable with not looking to ‘fix’ but being alongside the family.
7. I start to get confused about what early intervention actually does, and what my role is in these children’s lives. A situation that is on my mind right now is I started working with a child who has a rare syndrome, and the mother is very anxious and very focused on the child catching up to his peers, and closing the gaps where he showed delays in our initial evaluation of him. I have only met with the family twice however, mum looks at me at the end of the sessions, expecting more, concrete ways to catch the child up in their development, and, while I know she is speaking out of an abundance of anxiety, I also find myself wondering how I can actually catch this child up and what my role is outside of helping the mother understand development, understanding what comes next in his development, and understanding how to support those skills through play activities and through structuring his environment helpfully.
Comment …understand where the parent is coming from. They are scared, they are fearful for the future, they are grieving for the family they thought they would have, they feel responsible – was it something they have done? All behaviour is communication. This is the same in adults as children. What is this mum’s behaviour telling us? I am anxious about the future? I am lost here? ‘Listen’ to what their behaviour is telling you. What would be an attuned response in this situation? Sit with this for a moment. Ask mum what is important to her this week. To listen, to watch, to hold the parent and the child in mind. Sometimes doing less is actually doing more. This doesn’t always make us feel comfortable, we feel we should be seen to be doing. What is more important is that the parents are ‘doing’; you are supporting them to become a parent to this child.
You are undertaking your role when you look to support this child’s development through play and paying attention to what their environment can provide. The biggest part of a child’s environment is their parent. How can you support this parent to be available, in the moment with her child, to be the one to do the playing and see the environmental affordances for her child.
“ When parents read their child’s behaviour & follow their child’s interests, the child will learn to participate in increasingly complex interactions” van Wassenaer-Leemhius
If possible, have a session just with mum and support her to think through what the most pressing thing for her now and support her to work out what she can do to help this.
Sometimes it’s not the right time for tasks and goals. Parents, like all of us, cannot listen and learn new skills when they are stressed.
Step back and consider how often in our therapy sessions do we just get going – plying our trade, carrying out our assessments, getting in and hands on the child, without looking up at what the parent’s needs are in the moment. Are we ‘doing to’ rather than ‘doing with’?
Support the parent to be comfortable being with their child where they are currently. This will help them achieve successes, feel like the competent caregiver they are, this gives them a sense of control and ability to make choices.
Praise them for what they are doing and becoming as a parent to their child. Show them the things that are going well. However tiny the steps, help them to shine out for both the parents and the child. Remind parents they are the most important person in their child’s life. Their child is fortunate to have a mum/ dad who cares so much. They are doing a great job.
Parents are learners as much as the child and as much as we are every time we meet a new family.
You mention about getting confused about what early intervention does and your role in their lives. When we feel uncertain that creates anxiety in us, this becomes our internal sounding board in those moments, we interpret others communication signals from this state of stress in ourselves. We may be miss reading the parents cues.
We don’t know it all, there will always be more that we don’t know than we do! But you understand more than you realise, and you question. This is how we will learn still more and become more comfortable that you have much to offer in support of your families.
As Brene Brown says “What we know matters, but who we are matters more”
8. I hope you’re following my questions. I would appreciate and welcome any thoughts you have on this.
We thank you for your great questions. These are points we’ve all asked ourselves a thousand times.
This is where we all start, with a million swirling thoughts. Experience helps us cut through the swirling cloud but even then, we can miss pointers, and as we gain more knowledge, we see yet more ways we can do better, and have yet more questions!
“Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. “ Rainer Maria Rilke
If you would like to learn more about sensory development in early intervention have a look at our Sensory Beginnings Master Course