The connection between parent and child is a fundamental part of development. When a parent can't seem to connect with their child, they can feel uncertain and confused, wondering what they are doing wrong. This can lead to increased anxiety, concern and self-blame, while also further impacting the child-parent relationship. Often when the parent seeks help from their GP, they then experience long waiting lists and extensive form-filling while juggling a multitude of unco-ordinated appointments. That's on top of balancing work commitments and the general demands of family life.
While supporting under-fives in PVI and childminder settings in Newham, London, the SEND Hub has encountered increasing numbers of families in this situation, especially those with children waiting for a diagnosis of autism spectrum disorder (ASD) who were receiving little or no professional input or support as they navigated the system. Practitioners at the SEND Hub decided to rethink how they could work better with families early to avoid the children experiencing further disadvantage.
‘We know early intervention is best, but it was taking up to two years for children to get any support, let alone diagnosis,’ says Newham area SENDCo Eunice Costello. ‘We really needed to do something to support the children and the parents because a lot of them didn't have an understanding of their child's needs.’
SEND Hub manager Alison Lentz adds, ‘Newham is very diverse in terms of language, culture and educational needs in adults, so navigating long waiting lists and different processes was hard for many parents. We knew we had to take away the paperwork and have a service that actually met the complex needs of the child. Having speech and language therapy is not enough. They need a full package. And the parents are in absolute desperation and need that family support.’
In response they devised Connect with Me – a short early intervention programme that brings social, educational and health professionals together to provide intensive back-to-back therapies for parents and their child who may go on to receive a diagnosis of ASD. ‘The programme is called Connect With Me because that's what we’re looking for,’ says Alison. ‘We want to encourage communications between parents, professionals and children.’
The programme was piloted in Newham for three years and is being rolled out in partnership with two more organisations in the area.
MULTI-AGENCY SUPPORT
Children who can benefit from Connect with Me are identified through the early notification process. ‘These are often children who have not been seen by other professionals,’ says Eunice. ‘Often settings are saying they’re struggling and parents are struggling.’
The six-week programme works with five families at a time. It supports parents by creating a ‘team around the family’ at the earliest point of identification of a child's additional need. Therapists and families attend the group together for half a day each week at a Newham nursery school to reduce service waiting time and duplication of interventions. As part of the course, the child's key worker is also invited to attend a session so that they can take some of the practical work back to their setting.
Importantly, parents are regarded as being ‘at the heart’ of the programme, which the devisers say is powerful on many levels:
- It acknowledges the role of the parent as the first educator.
- Parents are acknowledged as experts on their own child and can share their well-informed opinions with professionals.
- By working together, parents and professionals can piece together a more holistic picture of the child in their home and nursery life.
- Therapy practices become more ingrained in daily life, which maximises the impact of expensive interventions.
- Parents become advocates for their child, which can reduce the likely involvement of social care as children get older.
A family co-ordinator oversees the programme and ensures parents are committed to the full course. They also create a WhatsApp group for each cohort. ‘This means parents can chat to each other, which breaks down barriers of isolation,’ explains Alison. ‘They all have young children with additional needs and it's good for them to know that they’re not on their own.’
The programme takes the same format each week to establish reassuring routines for the children and their parents. It begins and ends with a welcome and farewell song – which sets the interactive tone of the course – between which families rotate around a ‘carousel’ of five 20-minute sessions, each tailored to their child's needs:
- A speech and language therapist uses parent-child interventions to promote communication skills development and reciprocal engagement between children and parents.
- Sensory play to help understand the child's sensory and physical needs and prepare them to learn.
- Music therapy uses a variety of instruments to facilitate joint attention and shared play, support receptive and expressive communication, as well as encourage and develop vocalisation, sound formation and language.
- Sensory storytime to bring familiar stories alive to help children to engage in them.
- Family support while the child experiences ‘down time’ with a practitioner. Time is given for parents to ‘share’ – whether that is receiving practical advice, signposting for benefits or offloading emotional baggage.
During these sessions, parents learn useful techniques and activities they can practise at home. It is felt that the 20-minute sessions are better suited to early years children, as opposed to the hour-long sessions that are usually offered and can be too overwhelming and intensive.
The professionals meet at the end of each session to discuss each child. This is an opportunity to jointly comment on progress, plan next steps and share any concerns or suggestions for further support.
FORCE FOR GOOD
Evaluation from the pilot has found that the holistic approach has brought significant improvements in children's joint attention and symbol use, emotional wellbeing, relating, use of voice, play and creativity.
Parents report significant changes including an improved relationship with their child, their child's improved ability to regulate emotions, along with their own ability to support their child. They are also better able to cope with daily challenges. The programme helps parents to feel empowered, supports them to understand their child better and accept their potential diagnosis (see Case study).
Parents, therapists, practitioners and key workers agree it is a highly positive experience that should be offered to all families requiring early support with ASD.
The family support continues when the programme has ended with the family co-ordinator running coffee mornings and having follow-up conversations with the families.
‘We feel very strongly that we are changing people's lives,’ says Alison. ‘We’re not solving their child's autism but we are helping them to view their child differently, begin to understand what their child's needs are and where they can get support with meeting those needs.’
CASE STUDY: ‘a proper family’
A family, who did not understand their child's needs, was recently referred to Connect With Me. They struggled to ask for support because of the shame they felt about their daughter's behaviour. The mum had not heard of ASD and believed her daughter had an evil spirit inside her. She was afraid of her child, scared to leave the house and refused to attend the programme.
The dad attended with his daughter but struggled to speak at first because he was so stressed by the situation.
Practitioners decided to conduct a home visit and noted how the mum would step back whenever her daughter approached her because she was so scared of her. They encouraged the dad to explain to his partner that their child has autism, and provided him with information and links to online videos to show her. She grew less afraid of her child and started to engage with her.
The mum agreed to leave the house with her children, who previously spent a lot of the time watching TV, and visit a Children's Centre with their family co-ordinator. They have all benefited from the additional input and social interaction.
Both parents started attending the Connect With Me programme and learnt strategies for supporting their daughter. Professionals have seen a big change in the child, who now engages with others and makes eye contact. The parents believe their lives have been changed by the support and now regard themselves as a ‘proper family’.
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