TAC Bulletin Editorial - Goals, commitments and promises for families who have a baby or young child with a multifaceted condition. Are mine the same as yours?

A child with a ‘multifaceted condition’ has some or all of the following conditions in combination: physical, sensory, or learning disability; social communication disorder; serious illness; uncertain or shortened life expectancy. When professionals from an early childhood intervention (ECI) or an early support (ES) service begin work with a baby or infant with a multifaceted condition, what goals can they set for the new work? What commitments can they make?  Can there be any firm promises about what they will do?

Answers to these questions are essential for parents who are investing hope and trust in professionals (or who are being asked to) and for professionals who need to plan a programme of action. If there are no goals, commitments or promises, how can parents or professional decide if the service is effective or comment constructively on its successes and failings?

The question arises now whether the ECI or ES service is primarily for the benefit of the child, the parents or the child and family together.

In working with babies and young children with multifaceted conditions, I have never been able to predict or promise what might be achieved in terms of child development. Checklists of baby or infant skills have been of no value as guides to future work or in predicting achievements. Teachers, therapists, nurses and educational psychologists who are child focussed can feel they have no solid ground to stand on at this point – no opportunity to fulfil their job description and do what they are paid for.

Professionals who are parent-focussed, for example counsellors, clinical psychologists and psychiatrists, might be available (rarely in my experience) to support new parents with their anxiety, unhappiness and stress. This has not worked well for families I have known because parents, understandably, have not been able to make a clear distinction between their own situation and needs and their child’s – and because this sort of counselling has required the child not to be present. For parents, this can be difficult to arrange or it is not what they want.

But parents deserve some focus. While they are first adapting to having a child with a multifaceted condition in the family there can be many negative emotions including deep anxiety, guilt, blame, resentment and general stress. There are confusing thoughts to sort out, for example: attitude to disability; resentment about imposed changes to work study and social/leisure activity; loving the child who arrived while grieving for the perfect baby who did not; wariness of loving a child who might not live very long. I am not suggesting these parents automatically need clinical psychologists or psychiatrists but they will benefit greatly from regular contact with a skilled listener. When this works well, negative emotions and confused thoughts can be resolved before they turn into long-term debilitating emotional states.

The logic of the above arguments is that ECI and ES services for these children must be child and family-focussed. Many professionals in various countries reading this will be working in just such a service. So how is the dual focus managed? How are the professionals trained? Are they education and therapy professionals who do their best to support parents (probably the most common situation) or are they professionals in a counselling role who then try to help the child’s development? The latter option seems unadvisable. But the former option, unless the professional has appropriate qualifications and experience in counselling, downgrades the importance of supporting parents.

Another question arises now: given a lack of properly trained professionals for fully-fledged child and family-focussed ECI/ES support for children with a multifaceted condition, which has the greater importance, education and therapy for the child or support for the parents and other close family members? While the answer might come to you very quickly (‘The child, of course!’), it is worth considering that the family is probably the child’s main carer, educator, advocate and protector well into the child’s adulthood and perhaps beyond.  And then consider whether skilled family support might prevent some families falling apart, support them in getting the family back on track with a quality of life, give them skills to meet all future challenges and battles, and generally increase their resilience.

Returning to the theme of setting goals, commitment and promises for families who have a baby or young child with a multifaceted condition, I offer below the start of a list of valid and workable promises that a family might like their ECI or ES service to make. Whether or not these promises can be made, will depend on the nature of the service and the competence of the professionals around each child and family.

1.            We promise to work with you with respect for you, your children and other close family members. This includes acknowledging your language, culture and belief system.

2.            We will work with you as partners in a warm and supportive relationship of familiarity, honesty and trust.

3.            We will get to know your child very well so that we can help you find the best conditions for him or her to be free of pain, to have optimum nutrition and the best possible sleep patterns.

4.            We will get to know your child very well so that we can help you find the best conditions for you and your child to get to know each other, enjoy each other’s company and form a lasting bond.

5.            We will work with you to find the best conditions for your child to enjoy baby games, play and other fun activities.

6.            We will work with you to find the best conditions for your child to develop and learn – whether at home, in a playgroup, nursery or first school.

7.            We will offer you and close family members (siblings, grandparents), when and if you want, emotional support. We will be confidential listeners if you want to talk about your feelings, worries, dreads, joys, hopes and aspirations.

8.            We will try to help with some practical solutions if you are getting exhausted and stressed most of the time.

9.            We will work with you to regain or maintain the best possible quality of life and support you as you work to get your family back on track with a normal family life – work, study, leisure and social activity.

10.       When we cannot help with any of these things, we will help you find others who can. If other professionals are helping your child, we will try to form a Team Around the Child with them. When you are considering investing in an additional education or therapy programme we will, if you wish, help you decide if it is worth the money and time you will have to invest – or if it is bogus.   

This list or promises, that would only be made once the parents and professionals have agreed to work together, follows the sentiments in ‘Early Childhood Intervention without Tears: Improved support for infants with disabilities and their families’.

Perhaps you work with young children who have a multifaceted condition. Perhaps you are a parent, family member or carer. Do these promises feel appropriate to you? Would you add to them? Which ones would you remove? If you are a professional who supports children and their families, do you feel you have appropriate training?

Editorial by Peter Limbrick, September 2017.

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