A model for Early Years family intervention supports for children with global developmental delay/ emerging learning disabilities in Wales: professional system considerations.

My career as a Clinical Psychologist has spanned over 20 years and has been in supporting children with learning disabilities and their families. Over four years ago I took up a post to work with children under 5 with Global Developmental Delay/ emerging learning disabilities and their families. ‘The system’ has always requested via a professional referral that I work to understand these families and then to make things better for them (fix it).

However I have always been inspired by the ways in which these parents are managing and coping. I have not merely tried to just understand and make better but to really listen to their stories, their hopes, their fears, their dreams and this in turn has developed my own ways of viewing the world, my humanity and compassion. I believe it to be an honour to have these experiences with these families. I seek and want others (professionals, lay people and other families) to see other perspectives, to understand and to gain from working with these families like I have done.

When a parent is told their child has suspected or probable developmental disabilities, a multitude of professionals enter the family’s life. Each of these professionals looks at the individual ‘bit’ of the child in which they are ‘expert’, e.g. the physio looks at the physical impairments, the speech therapist looks at the language impairments and the occupational therapist looks at the fine motor and self-care impairments. And these services seek to support the development of the child by making requests of the parents for their time, skill development and engagement. However failure of these parents to follow complex health regimes can lead to negative judgements of the parent’s capability and compliance. It also adds to a sense of guilt for the parents if they are unable, for a multitude of reasons, to achieve all the outcomes their child is set.

In a personal communication a parent told the author. “As parents you always want the best for your child(ren) and will endeavour to help them in any way you can. When that means you have to learn new skills in a variety of different specialisms, all at the same time, it’s simply overwhelming and sometimes you feel like you’re not doing any aspect of their care very well. This pressure on top of working, home life and other life stresses can actually lead to resentment of certain services. We have experienced professional’s negativity when we’ve been unable to complete tasks. This leaves us with a feeling of being a bad parent.”

These ‘extra’ demands of looking after a child with developmental needs and managing oneself in relation to a complex set of professional demands (services) could be called CAD ‘Critical Additional Demands’. These CADs are practical and emotional and are deeply intertwined. Having a child with developmental difficulties forces a radical restructuring of expectations and daily life. There are a complex array of emotional experiences and dilemmas that parents are often fluctuating between and as such I have developed five key ones which potentially form a model to think about some of the dynamics for families in these situations.

1. Denial v acceptance

We know that adjustment to a new reality takes time. It is an expected response to an unexpected situation. Acceptance is less a light going on and more a dawn breaking slowly or to continue with a light metaphor – it’s a flickering process which comes and goes and comes and goes. If parents do not have a frame of reference in which to encapsulate and ‘hold’ the differences, their experiences and emotions are not supporting them to develop their new realities and narratives.

2. Guilt v forgiveness

Any delay in a child’s development can often engender a sense of personal failure for a parent. What did I do wrong? What did I do that I shouldn’t have done? What have I done to deserve this? This is all my fault. Rather than becoming all consumed by these questions it is important that, in time, they start along the path to develop an understanding of their situation i.e. what is the best way to describe my child? Will it be useful to diagnose? Parent’s need help to understand where responsibility truly lies (i.e. no one is responsible for their genetic makeup), to talk through their experiences and to understand their stories and respond in the most useful ways.

3. Anxious thinking v reimagining the family story

Parents fear for their children’s future and their own. What will become of….. Can I do this on my own? Will other’s judge? Will my family fall apart? Will my other children understand? Parents need to find the strength to live with these fears and to grow a ‘thick skin’ yet fear and courage ebbs and flows as new challenges arise.

In another personal communication a parent told the author, “Of course I’ve got this. My child is amazing. We’re ready to educate all. She opens our minds to the real world, to all that is out there. I’m the perfect person to hold her hand as she guides us through. But how, when the world just judges her each day? How can I protect her from the reality that judges her on an extra chromosome as opposed to the being all that she is? One that fails to acknowledge all aspects of her beauty. But she has me; she has us and she is her; an invincible team and unstoppable in her dreams. From day to day you can go from invincible to invisible; the sky is the limit to lost and loathing. It’s a cliché but what a rollercoaster journey! The reality is that your child is wonderful and a new family has your back and sees the possibilities and promise in it all. They share and understand your emotions and together of course it is all possible.”

4. Hesitancy v agency

Our health care system is organised for the convenience of health care professionals. It invites a passive good parent role. (A good parent asks few questions and does what the health care professionals say.) We need to develop agency in parents and to support them to accept what they must and to work to change what they can in a bid to improve their quality of life and ability to cope. There is a balance to be had between privacy and comfort and asking for help from others. How can we balance an awareness of the intense emotions that are experienced by these parents whilst being available to hear and validate the sometimes ‘unsayable’? How can they take up leadership roles in the networks of professionals and others in the system gathered around them?

5. Isolation v connection

Social relationships change as parents cannot easily access the community or when they do, they may encounter society’s prejudices and barriers. Frightened by social judgement some families distance themselves from the outside world. “I find it really difficult when out with my son and people stare at his behaviours. I find the attention on me is like I’m in a spotlight, this then sets off my anxiety, so I either opt to go when places are quieter or I don’t go at all”. Parent of a child with Cri- du- Chat syndrome.

What is clear is that a family’s emotional and practical experiences are clearly at the centre of the child with developmental difficulties lives and yet there is no model of care that manages to accommodate and acknowledge all of these key dilemmas. By not recognising and validating these experiences I believe that we are exacerbating suffering for these children and their families. The model of care should be about adaptation, re-framing or seeing from a different perspective, i.e. a ‘fulfillment in new dreaming.’ Families must adjust physically, psychologically and practically to living with limitations which can be severe and uncertain at times and may not be resolved.

With this in mind I believe there are 2 clear principles to follow:

1. Caring about what matters

Caring, not curing and listening and not advising. This can only be achieved when the child’s developmental disabilities are addressed within the broad context of the child and family’s lives. The challenge is to create an effective system that can support families through this. How can we shift from the currently dominant medical model of care where services are too child centered and focused on diagnosis and where parents receive little or no support for themselves?

2. We the people

The principle here being to engage a resource that is largely untapped in our strained healthcare system; the knowledge, wisdom and energy of individuals, families and communities who have a child with developmental disabilities / learning disabilities in their everyday lives. Families being co-producers and active partners of the service rather than passive consumers.

Steps in the right direction: A new model of ‘care’

My service is called Llygad (EYE), Early Years Experience team for children with Global Developmental Delay / Emerging Learning Disabilities. The service is currently developing a community psychology way of working which has compassionate witnessing, normalising and getting alongside at its core.

The ‘core’ offering is ‘Portage’ and there are three child development advisors who are responsible for the facilitation of portage conversations. The aim of this is to provide safe, stable, nurturing relationships and environments for families, parents and children and opportunities for families to play and have fun. This supports the quality of parent-child relationships in order to reduce the risk of behavioural problems. The Child Development Advisors work alongside parents and tailor their support in relation to the child and the family’s needs. The work is embedded in the family’s home with additional community support in the form of coffee mornings, summer picnics and Christmas parties.

I have developed the service to include two brand new roles, currently filled by two counselling psychology trainees. One of these roles is to offer psychological mental health / wellbeing support for parents to adjust and come to terms with the fact of having a child with GDD / emerging LD, understanding their own attachment style in relation to having a child with additional needs and how their early experiences may shape who they are and highlight the parts of parenting a child with additional needs that is tricky. Parents can opt in at the initial consultation meeting. There is also an email address and phone number parents can call at any point to self-refer. The support requirements of these parents is different to ‘mainstream’ and as such it is essential that the role is embedded within the early years team.

The second trainee counselling psychology role includes utilising behavioural systemic therapies to get alongside families, to co-produce understandings and solutions to problems and issues when parenting a child with GDD. Alongside this is support for transition to nursery such that what has been learnt through working with a Child Development Advisor and the trainee counselling psychologist is shared (co-produced formulation) and ‘what works’ is modelled to the nursery.

Most recently the Early Positive Approaches to Support Model (EPAtS) has been introduced to the system. E-PAtS was developed by Gore, Bradshaw, Hastings (Gore Hastings and Brady, 2014). This model uses lived experiences and research evidence to support families of young children with disabilities with the extra challenges they may face. It provides high quality information and sensitive support in the early years with the aim of maximising joys and reducing the challenges, thus increasing quality of life. Support groups are jointly run by parent and professional facilitators evidencing the need and role of peer expertise, empathy and lived experiences. The hope is that the EPAtS model will become a core delivery option for all parents whose children have significant delay from 2.5 upwards and to develop an ‘Expert parent by experience’ post to support and facilitate this.

What else is needed and what stands in the way?

More workers who understand these ways of working embedded in the child health system are needed. Specialists such as systemic family support workers who are receptive to the context in which these children are living and can validate fears and concerns as well as enhance positive coping and communication could be an essential element. These specialists would not reduce the multidisciplinary team’s duty to be attentive to psychosocial needs but focus on them working together to develop much improved teamwork.

What really stands in the way is a narrative that says ‘we are already doing loads for these families’. They say all the information is there for families. But as can be seen ‘information’ is not what is missing. They say these children are just like all children so needs led services will meet their needs. But needs led services are not privileged with understanding of the complexity of the parent’s emotional dilemmas or the complexity of the children’s communication and skill development needs. They say there are lots of peer support groups but peer support groups are no good if the correct knowledge and understanding of how and why challenging behavior manifests itself is unknown and how to support children with skill development is missing.

Dr Emma Johnston is Clinical Psychologist- Service Lead at Llygad: Early Years Experience Team (Psychologically informed support for families of children (0-6) with significant Additional Learning Needs) at the St David’s Children’s Centre, St David’s Hospital, Cardiff.

Emma shared her paper with us after reading our recent report on Institutionalising Parent Blame.