Matthew's family and their multiagency keyworker
When he was eight months old, our son Matthew was seriously ill in hospital, suffering from pneumococcal meningitis. This left Matthew with brain damage, autism and epilepsy. In the months after Matthew came home from hospital we were finding it extremely difficult to deal with his complex medical problems. We were also noticing significant delays in his development.
As the time passed and our concerns were being dismissed, we began to feel increasingly isolated, not knowing which way to turn next for help. Then we made contact with the charity, One Hundred Hours. Our immediate impression was that at last we had someone who would listen to our concerns for Matthew however long it took and whenever it was, and genuinely sympathised with them.
One Hundred Hours began helping us to find the right people to contact. They then supported us at the subsequent meetings to ensure that we were getting a proper response to our concerns. Very soon we were able to obtain a diagnosis on Matthew’s development, which, although heart-breaking for us, enabled us, with One Hundred Hours’ considerable help, to identify what would be the best and most appropriate help that we could get for Matthew. This culminated in us very quickly obtaining a place for Matthew at the local Mencap nursery.
The next initiative suggested to us by One Hundred Hours was to arrange a meeting with both Matthew’s doctors and the nursery staff who were looking after him. This ensured that there was a co-ordinated approach and that everyone involved with Matthew was aiming for the same objectives. It was only after this that we began to start seeing some improvements in Matthew’s development.
One Hundred Hours continued to work with us providing ‘a shoulder to cry on’ during our many low points. Finally they assisted us in completing Matthew’s Statement of Special Needs, helping us to ensure that we obtained a place for Matthew at the school most suitable for his needs.
We know that if we hadn’t discovered One Hundred Hours when we did, Matthew would probably not have made the progress that he has so far achieved and for that we cannot thank them enough.
By Mr and Mrs Firth, parents with whom the One Hundred Hours voluntary organisation worked in Yorkshire, UK.
Anya, her family and her keyworker
This account is taken from Anya’s keyworker’s notes and so describes a real situation, but with names changed. The experience of each child and family and the situation they find themselves in is unique. The experience of Anya, her family and keyworker reinforces the following elements of effective joined-up early support thinking and practice:
Early support for the child and family should come as early as possible. Anya and her family would have benefited from earlier help with play activity and in getting answers to their many questions.
Ideally, the regularity of sessions and the duration of each session is determined by the needs of the child and family at the time. Anya’s family had at the beginning six or seven visits per month with each visit lasting about two hours. Other families had more frequent visits perhaps of more than two hours during difficult times. Some families wanted only weekly visits of between sixty and ninety minutes.
Within a ninety-minute or two-hour session there is usually enough time to focus on the infant and to talk to parents or other family members. This avoids the tension that can arise in a practitioner trying to work with an infant while the parent is upset and crying, or attending to the parent’s need while being conscious that an opportunity is being missed to extend the infant’s learning.
Parents of babies and infants who have challenges to their development and learning need a trusted and knowledgeable person to talk to in an ongoing helping relationship. There are so many questions to ask and so many thoughts and emotions to sort out.
There can be benefit for the whole family when parents or other family members are supported in giving the child the best possible experience of being alive. This can mean seeing the child and not the impairment. It can mean helping parents see they have a valued new family member and not a little invalid to nurse.
Anya was approaching her first birthday when a keyworker from a voluntart agency made the first working visit to her home. Anya’s parents had asked for this free service and this first session followed a period of phone calls and informal meetings while her mother, father and grandparent learned more about what was being offered. There followed two years of regular home visits by their keyworker until Anya started school on a part-time basis. After that time, the keyworker stayed in touch with occasional visits during a few more years and was able to help with some issues that arose about Anya’s schooling.
Families had a variety of reasons for having a One Hundred Hours keyworker. Some would articulate their expectations of the service very clearly. Other families felt they wanted support but did not go beyond general terms and were not asked to. Anya’s family were in the latter category but it was clear their wanting a keyworker came from their deep care and concern for Anya. Anya stayed in hospital for a few weeks after birth and was given a diagnosis of cerebral palsy before going home. She was under the care of a paediatrician at the local child development centre and had been seen intermittently during this first year by a physiotherapist and twice by a speech and language therapist. She did not attend playgroup or nursery and was mostly at home with her mother, Jo.
For most sessions with the keyworker Anya was at home with her mother while occasionally Anya’s father or grandparent was also present. How each session began depended on the immediate situation and any new concerns. In most sessions there was time focussed on Anya and time for conversation with her mother, usually with a cup of coffee. There were occasions when Anya was asleep so the session changed accordingly. The relationship between the family and the keyworker was warm, trusting and respectful and sessions were relaxed.
During the first weeks of this support the keyworker wrote to Anya’s paediatrician, physiotherapist and speech and language therapist with the aim of developing future collaborative teamwork around Anya and her family. The keyworker learned from Anya’s parents about what these practitioners had already said and done and suggested Jo tell them each time she sees them what was happening in the sessions with the keyworker. This would be an opportunity for them to keep up to date with what Anya is doing and to comment on the approach if they wished.
Topics of conversation with Anya’s family ranged widely and could be focused on Anya or be of a more general nature. Confidential conversations were not recorded in the keyworker’s notes and are not listed here. First topics included Anya’s habits, her likes and dislikes, her birth, her time in hospital and how she reacted to coming home. There were many conversations with Jo on her own, some with laughter and some with tears. The keyworker’s role varied between being an active listener and giving or promising to get information. Advice was never offered - a rule of the agency. During these first few weeks topics included vision, hearing, epilepsy, medications, head circumference, cerebral palsy, children who die, guilt, survival and length of life, sleep, appetite, feeding and drinking skills, stiffness, eczema, reflux, use of hands, use of hands and eyes together, play, vocalising, physiotherapy, exercises, speech and language therapy, early communication and understanding, finger sucking, crying, teething, weight, blood in faeces, cranial osteopathy, playgroup, nursery, school, drinking bottle, cup, spoon, potty training and constipation.
The topics about children who die and about guilt are put together in the above list and were linked in the conversations. When an infant has a multifaceted condition and an uncertain future, a parent’s mixed emotions can include fear the infant will die and, at the same time, apprehensions about how difficult life might be for child and family in ten, twenty or thirty years if the child survives. These apprehensions can feel to a parent almost like hoping the child will die – and then guilt arises. The time spent with Anya as the main focus was always with parent and keyworker sitting on the living-room floor with her. The adults responded to her mood and energy level and tried to develop any activity Anya initiated. Jo was always keen to do the exercises given her by the physiotherapist and was much less enthusiastic about the speech and language therapist’s suggestions. This pattern continued with the strong parental hope and anticipation of Anya learning to walk.
The following extracts from the session notes have been selected to focus only on play activity. Early conversations with her parents indicated that Anya did not play. When awake, her time between caring activities was spent propped against cushions on the sofa or doing the physiotherapy exercises. This seemed to be a pattern set when she first came home from hospital many months ago. Play was not a parental expectation and Anya had no collection of her own toys.
Session 1
Anya was happy and smiling propped against cushions in an armchair. Her hands were mostly in her mouth, first one then the other, and she held a rattle when it was put in her fingers but could not release it. She repeatedly took the rattle to her mouth. She was moved to a supportive floor seat, which she had occasionally used before, with a plastic tray, which she had not used before, and a shiny bell was held within her reach. She looked at this and once or twice accidentally knocked it. This excited her. While the adults talked she did reach and touch the bell while it lay on the tray. The keyworker suggested parents suspend noisy toys in front of her when in this sitting position. Jo was delighted that Anya had sat to the tray and knocked the bell.
Session 2
Jo was pleased that Anya has been using her hands more since the last visit and has been vocalising more. Someone has rigged up a frame for Anya which consists of toys suspended from a bar which clamps to her tray. During the visit Anya sat in the floor seat propped forward with padding up to the plastic tray with the suspended toys. She once or twice knocked the toys while, some of the time, looking at her hands. She also made occasional contact with toys placed on the tray.
Session 3
Anya was sitting in the floor seat with her tray and suspended toys. She was not touching them or looking at them, instead she was sucking her fingers (either hand). Later, held in a supported sitting position on the keyworker’s knee with Anya’s knees flexed and her feet held flat on the floor, she reached for and touched a suspended bell. She then grasped the bell in first one hand and then reached again and grasped it in the other – while looking at it. Jo said she had never reached for something she was looking at before. Later, Anya was seated on the floor with supporting props. She did not reach for a toy in front of her on the floor but did then touch a bell that was draped with a ribbon over her foot.
Session 4
Anya has now developed the ability to reach to the floor to pick up a toy while she is seated on the floor.
Session 5
With a pop-up toy and with a telephone with small buttons, she showed improving manipulation while looking at what her hands were doing.
Session 6
When she was fingering some small toys she picked her spoon up without help and put it in her mouth.
I want to re-emphasise that these extracts focus only on use of hands in play and cover only the first four-week period. This wa part the ‘getting to know each other’ phase. These notes have not fully reported the family’s delight from the first session onwards at seeing Anya play with toys. They had not expected this ability.
Anya’s story supports the idea that children with these challenges will benefit from the earliest possible support for their development and learning. It seems very unlikely that eleven-month-old Anya’s readiness for this play activity matured at exactly the same time the keyworker started visiting. It is much more likely that Anya was responding to a new situation and was awakened to new possibilities in her life. Focussing on Anya’s play activity helps make the point that early support has a direct bearing on quality of life. While ‘hand/eye co-ordination’ or ‘visually directed reaching’ are valid terms describing a developmental stage, reaching for toys for Anya was just play in the here and now. Life now could be less passive and much more exciting. With keyworker intervention, Anya achieved the normality of an infant at play. And play is fun!
Conversations with the family suggested they had always thought of Anya as a sick baby and as an invalid. While parenting Anya required extreme watchfulness for signs of ill health, careful feeding, managing crying episodes and getting her through the practicalities of each day, it had not included baby play activity with fingers, toes, rhymes or playthings. Parents and grandparent were loving and caring but were taken over by the idea of Anya as a medical case – not so much as a child. The time spent on physiotherapy exercises were part of that mindset. It is not unusual that parents who have accompanied their baby through a medical crisis with survival at risk and then weeks or months of hospitalisation before the baby comes home, can maintain a medical view of their baby and even see their role as more nurse than parent. It could be that the professionals who first support the baby and family are similarly medically focussed and do not mention the importance of baby games and play – but it could also be that parents only hear what they are ready to hear and what seems most relevant to them at the time.
There is no intended accolade for Anya’s keyworker in the above account. The keyworker did what all experienced nursery workers and teachers do on meeting a new child – quickly appraise the child and the situation and engage them in some sort of play or social activity. This does not wait for a formal assessment. Within the first seconds or minutes, the child’s response is observed and the activity is adjusted as necessary. It seems highly likely that Anya could have started playing earlier if she had joined a playgroup or nursery, but there are very many reasons why parents of infants with significant challenges can delay or decline these opportunities. It is my experience that this sort of early childhood intervention, wherever it happens, can help bring the infant and the family out from the medical world into a more normal place with less restrictive assumptions, attitudes and activities. Anya’s new play activity lifted the whole family and raised their opinion and expectations of her – and I think perhaps of themselves as a family.
Note:This account is based on the appendix in the book 'Early Childhood Intervention without Tears' by Peter Limbrick