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Lola Alvarez-Romano and Jessie Ellinor look at the trauma faced by some parents of children with SEN and how schools can support them

Having a child with complex needs takes parents down a path that most of them had not expected to be on and often know 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, starting with that memorable moment when they noticed that the child might not be developing in an ordinary way. At times, the parents’ initial fears are pushed to one side 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. Then one day, they have no option but to embark on the assessment process, where a series of medical and developmental investigations begins. 

For most parents, this can be a terrifying step into the unknown, fraught with fear and a real dread of what they might find. Nowadays, parents have often started to investigate their suspicions, prior to assessment, by searching online. They may be facing a plethora of medical assessments, diagnoses and prognoses; this means they may be having to absorb a tremendous amount of alarming information, without actually having the time or space to process all of it. At the same time, parents may also, often subconsciously, have begun to mourn the child they thought they had, as many of the dreams and plans they hatched before the child’s birth come to an abrupt halt.

Psychological impact on families

As one would expect, this situation generally takes its toll on parents. For a while, everything else is put on hold: their marriage, other children, and everyone’s needs (including their own). Having to understand and accept whatever comes at them tends to absorb almost all their energy. When parents are having to make such an enormous adjustment, it tends to test all their internal resources. They may continue to function outwardly, but many of them, internally, have not recovered. These parents are effectually traumatised by their experience.

Garland (1998) describes what happens to us in the face of a traumatic event: “The mind is flooded with a kind and degree of stimulation that is far more than it can make sense of or manage… It is a breakdown of an established way of going about one’s life, of established beliefs about the predictability of the world, of established mental structures, of an established defensive organisation.”

Trauma alters our view of life in a long-lasting way; nothing can ever be the same. As professionals working therapeutically with families in a school setting, what do we need to be mindful of when seeking to understand their trauma? It’s important to recognise at the outset that not all parents suffer the same degree of trauma; in some cases, particularly when there are other neuro-typical children in the family, there can be an easier acceptance of the disability. The neuro-typical children in the family help to maintain in the parents a sense of hope about the future. Some of the life they had envisaged for themselves remains intact. 

However, in other cases, when the disability presents in an only child, or in all their children, the parents’ view of their life, themselves and the future, changes beyond what seems reparable. In some cases, parents even renounce their religious beliefs, feeling that God has abandoned them. Whatever form of treatment is offered, it will involve the containment of a profound and extensive sense of damage in the parents’ lives. At times, all that psychological support can offer is the function of tending to a wound that is not likely to heal, but can be made just about manageable.

The support schools offer to parents should give them the opportunity to reflect, to make sense of things, and to take stock of what is lost and what has survived. This can bring about some painful realisations. Their social life is invariably affected; while their child might initially be invited to their friends’ children’s parties, as they grow older and the gap widens, this can become an onerous and rather unrewarding task. Autistic children in particular can feel sensorially over-stimulated on these kinds of occasions and busy social events can end badly for both child and parents. 

The extended family

Unfortunately, for most people, children with SEN and disabilities can be difficult to read and this has a direct impact on the additional support available to parents. An overexcited and happy child can emit a piercing scream of joy but can also become aggressive towards himself or others when frightened or upset. 

In many families, the role of grandparents in supporting children is invaluable: they can babysit, take the kids on outings and holidays, and generally offer an extra pair of hands. When children have SEN or disabilities, though, grandparents can sometimes retreat: they worry about not knowing what to do with the child, not understanding what they want and not being able to soothe them; they can be frightened by the physical demands of having to manage the child or, when necessary, restrain them. All of this can seem beyond their capabilities and, consequently, they opt out. This reinforces the sense of isolation for the child’s parents: no-one, except for them, will be able both practically and emotionally to care for their child, offering an opportunity for much needed respite. 

Sometimes, parents can even feel a sense of guilt towards their own parents for not having produced a more “rewarding” grandchild. Where the child has a complex presentation, the additional health concerns that become apparent along the way mean that parents often have to announce yet more “bad news” about the child’s developmental progress. Some parents report that they have to console or comfort the grandparents, rather than draw any support from them.

It can get very lonely for parents and this generally brings them back to the same conclusion, that no-one really knows what it’s like for them. As Solomon (2013) eloquently notes: “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.”

Picking up the pieces

Working therapeutically with parents can be a little bit like visiting the scene of a tsunami: while one can find familiar objects that were once in harmony with their surroundings – perhaps a chair, a kitchen utensil or a child’s toy – in this disorganised state they merely serve to evoke what life must have been like before disaster struck. Therefore, the task of supporting parents is largely one of reconstruction: therapists proceed bit by bit, collecting surviving objects and finding new ones, so that a new life can slowly be put back together. It will not be the one they had before, but it can work.

Parents of children with profound disabilities often benefit from being able to access therapeutic support for themselves. If a school has concerns about a child, it is often because the family is under stress. The strain might not necessarily be caused by the child’s disability or SEN; it could relate to issues about the parents’ health, money, housing or concerns about siblings. More often than not, the parents are still in the traumatic process of having to come to terms with a diagnosis, or they are just coming out of it. Whatever the cause, providing support for parents in school can enable them to carry out their parental function, emotionally re-connect with their child and meet his/her needs, all of which brings about improvement not just for the child, but for the entire family. 

As Solomon (2013) explains, “Severely disabled children who will never become independent will not benefit from their parents’ negative feelings, and so their situation demands an impossible state of emotional purity. Asking the parents of severely disabled children to feel less negative emotion than the parents of healthy children is ludicrous. My experience of these parents was that they all felt both love and despair.”

Many parents of children with complex disabilities have been unable to mourn the “healthy” child that did not come. They have not been afforded the chance to process the quick succession of events and feelings, and all of this is tied up in one big emotional knot. Offering various forms of support within school can provide parents with space in which to think about their journey, process their emotions and explore how these feelings might be getting in the way of their ability to parent their child.

A supportive team

A family support team can be a very useful provision for schools to offer, especially in settings for children with complex SEN and disabilities. The team could include arts therapists, child psychotherapists, counsellors and family support workers. Support can be organised in a variety of ways, including individual and group therapy sessions and parent workshop sessions. 

Regular activities for parents, such as coffee mornings during term time, can provide invaluable opportunities for families to get together, share information and talk to those in a similar situation who might better understand what they are going through. Siblings’ activity groups in the school holidays can also offer similar opportunities to brothers and sisters of those with SEN and disabilities. These in turn help to ensure the families feel less isolated.

The referral process

Referrals for parents can be suggested by teachers when they feel that a parent might be stressed or struggling to cope; they can have a friendly chat and sensitively point out that the parent may benefit from spending some time, in confidence, with a professional. However, parents can also refer themselves. Many find that professional consultations give them an invaluable space in which to explore emotions that are often too conflicting to reveal in any other setting. This can significantly strengthen their parenting capacity and help them to make peace with their unforeseen journey. Teachers may also be aware of siblings in the family dynamic who would benefit from some support and can encourage the families to access sessions designed specifically for their needs.

Further information

Lola Alvarez-Romano is a child and adolescent psychotherapist and Jessie Ellinor is a drama and movement therapist and creative arts supervisor. They provide therapeutic sessions for parents and families at Oakleigh School and The Early Years Centre, a primary special school and nursery setting in Barnet, North London:
www.oakleighschool.co.uk

References:

  • Garland, C. (1998): Understanding Trauma: A Psychoanalytical Approach, Routledge, London.
  • Solomon, A. (2013): Far From The Tree: Parents, Children and the Search for Identity, Vintage Books, London.

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