“Therapists need to have a working knowledge of the stages of the family life cycle to determine how children might be impacted when the family is ‘stuck’ in one stage and unable to transition to the next stage.”
Eliana Gil, Play in Family Therapy, 2015
Having a child with complex disabilities or a life-limiting condition takes parents into a journey that most of them had not foreseen and often knew nothing about.
Having to face that their child has a disability was not what they had in mind when they decided to have a family, this was not the way it was supposed to happen. And yet, here they are.
The journey is often an anxious one, from that first memorable moment when they notice that the child might not developing in an ordinary way. At times the parents’ initial fear is pushed away and they attempt to cling to some form of hope, particularly in early infancy when there is still a notion that their child “might grow out of it” or eventually “catch up” and be like everyone else. Until one day when they finally have no option but to embark on the assessment process and the series of medical and developmental investigations begin.
For most parents, this is a terrifying journey into the unknown, which is filled with fear and dread of what they might find. By that time, parents nowadays have often started to investigate themselves by searching online, reading testimonies. At that point they are emotionally trapped in a complex, two-layered process.
First, they are thrown into the whirlwind of medical assessments, diagnosis and prognosis for the future. Because of the speed with which it is happening this is fraught with uncertainty and parents need to absorb a tremendous amount of alarming information, without actually having the space or the presence of mind to process it. Second, in a deeply personal and painful way, the parents have begun to mourn the child that they did not have. All the plans and dreams that were hatched before the child’s birth come to an abrupt and grinding halt.
With this knowledge in mind, we have worked hard over the last 15 years to develop our family support provision. As an outstanding special needs primary school and early years nursery in north London, the school community recognises the value of offering therapeutic input for parents who have found themselves in this situation. Through these provisions we aim to support and develop the family’s resilience and emotional wellbeing, which in turn will promote the wellbeing of their child or children. The Family Support Team has grown over the years and currently includes: two arts therapists (drama and music), a child psychotherapist, a counsellor, three family support workers, an early intervention co-ordinator and a school nurse. There are various forms of support which are available during term time. These are:
- Weekly arts therapy (family, individual or group sessions).
- Primary and secondary school sibling’s drama groups in the school holidays.
- Weekly/fortnightly individual counselling sessions.
- Half-termly parent workshop sessions.
- Regular coffee mornings and relevant trainings for parents.
Also, ad hoc support is offered when families need support to access external services or when interventions to support challenging behaviour are needed within the home.
So, what form do these interventions take and how are they “delivered” to families? We will give a brief insight into three of these interventions.
Arts Therapy Family Groups
Two HCPC-registered arts therapists (music and drama) are employed by the school. They use psychological theory to underpin the mixture of art form interventions, including drama, music and movement used in sessions.
Three group Family Arts therapy sessions run throughout the week during term time. The weekly sessions available are:
- An arts therapy (music and drama) group for parent, child and pre-school sibling.
- A music therapy group for parent and child, (specifically) with autism.
- A drama and movement therapy group for parent and child with a profound and multiple learning disability or complex mixed needs.
These are divided into two parts. The first part involves the children and parents taking part in an arts therapy session, using creative tools including singing, movement, stories, musical instruments, play, art and puppets.
After the initial 30-minute arts therapy session, parents take their child back to class and the adults then return to the therapy room for a 45-minute “talking time”.
This encourages parents to deepen their reflections on the preceding session and also gives them a chance to explore anything else that might be on their minds from their week – medical appointments, challenges and celebrations of their family lives. Both parts of the session allow a place for families to play and “be” together. They encourage connections and interactions to develop between each parent and child and for this to be extended simultaneously to all the other group members as a whole.
It is important to preserve the therapeutic boundaries of the sessions. Having a confidential space at a consistent and uninterrupted time, in the same room, allows trust to develop within the group. As the sessions progress, an understanding develops that there are no expectations for individuals (both children and parents) to “perform” in a way they may feel is needed in other aspects of their lives. In the sessions there is an inherit understanding that all interactions and communications made are meaningful and valued.
Having these sessions in groups of up to four families allows the children and adults to create peer relationships within the school community (as most of the children travel to and from school on a bus provided by the local authority, there is little opportunity for parents to meet through the school gate culture often found in mainstream schools). As familiarity and trust develop within the whole group, parents often appreciate having their child’s interactions witnessed and embraced by others, resulting in shared celebrations as these evolve.
Sibling workshops
Other family members are also kept in mind. During the school holidays two separate drama days are offered to the neuro-typical siblings of the school children, both primary and secondary-aged groups. The sessions are carefully structured with games, story-telling, improvisation and enactments, as well as space to express shared feelings and experiences of often being a young carer for their sibling.
Sessions are always planned and facilitated by the family support team, including a member of the arts therapy team. It allows individuals to discover their similarities and to relate and connect around issues which may not be fully understood by their peers at school.
At times children and young people can feel anxious when attending for the first time. The activities are flexible and supportive, and allow individuals to participate at their own pace. As they familiarise themselves with the structure of the day, one another and the understanding that this is a day focused entirely on them, friendships quickly form within the group.
Individual parent counselling
The school also offers an individual space for parents, in weekly or fortnightly counselling sessions lasting 50 minutes. This is a reflective and entirely confidential space, where parents have the opportunity to think about their journey and about other areas of their life, like their marriage or their other children. Often in these families, everyone’s needs, including the parents’ own, have been relegated to the back burner. In these sessions they have a chance to reflect, understand and “digest” everything that has been coming at them.
The notion that parents of children with profound disabilities would benefit from being able to access therapeutic support for themselves was the vision of the school’s former headteacher who observed that when the school had concerns about one child, it was often because the family was under stress.
The stress might not necessarily be about the child’s disability, it could be issues about money, housing or concerns about siblings. Seven years on, the “Space to think for parents” has grown and is now a well-established entity within the school. This regular and long-term intervention is offered to parents and is entirely confidential.
The Referral Process
Just as with the other therapeutic interventions in the school, referrals to the three interventions highlighted are made by the child’s teacher when they feel that a parent/family might be stressed or struggling to cope. Confidential discussions take place among the family support and/or multi-disciplinary team to think about the most appropriate provision. Families are then offered a confidential space with one of the therapeutic team, to discuss the support on offer. Although most of the referrals to the therapy department come from members of staff, in recent times some parents have referred themselves, aware that these services are available.
Meet the team
When a child starts at the school, families are invited to a “Meet the Team” morning. This gives parents the opportunity to hear from all the different professionals who offer additional support while their child is at the school. This is their first chance to hear about the in-house therapeutic services provided. Parents who have accessed them feel the sessions give them an invaluable space to explore emotions that are often too conflicting to reveal in any other setting. This is a simple formula but one that can significantly strengthen their parenting capacity. They begin to make peace with their challenging experience, which in turn supports their relationship with their child with complex additional needs.
“Perhaps the most insidious stress (of having a child with MLD) is the social isolation that ensues when their friends retreat, or when parents withdraw from their friends’ pity or incomprehension. The birth of a healthy child usually expands the parents’ social network; the birth of a child who is disabled often constricts that network.” (Andrew Solomon, 2013)
- Jessie Ellinor is a drama and movement therapist and creative arts supervisor. Lola Alvarez-Romano is a child and adolescent psychotherapist. The pair provide therapeutic sessions for parents and families within Oakleigh School and Early Years Centre in Barnet.
References
- Play in Family Therapy, Gil, The Guildford Press, 2015.
- Far from the Tree: Parents, Children and the Search for Identity, Solomon, 2013, Vintage 2014