“In its beginnings, a story strewn with uncertainties, a story alternating between hope and anxiety.

In bearing the unbearable, time must be tamed, separated, and reduced to a comforting present.

Still too much is unknown, too many possibilities fade, too many impossibilities are blurred ;

Each day marks more deeply the reality of the wound, every progress is marred by its imperfections and shows its limits even as it blossoms.

A strange dialectic to be lived one day at a time.”

The discovery of a hearing impairment, whether central or peripheral, in a child with another disability, or the discovery of a disability related to known deafness will revive the parents’ suffering and anxiety and place professionals in a very difficult position.

The diagnosis (and so the project) can only be established progressively.  What are the deficiencies and the potentialities ?  All this being modulated by the great unknown of the neuron plasticity possibilities.

This potential plasticity will justify carrying out in parallel the diagnostic procedure and early educational back-up.  The medical assessment will take place progressively and the diagnosis (or syndrome label) will be announced or made official much later.

In order to ensure the complementarity of all the tools available, the peripheral and/or central hearing defect will always have to be taken into consideration whatever the related handicap or handicaps.
 

Specificity of multiple handicaps :

The team  called upon to care for the child is generally informal.  Each one of the specialists, whether doctors (paediatrician, neuropaediatrician, ENT, audio-phonologist, physical re-educationist, ophthalmologist, psychiatrist, genetician, …) or psychologists, medical auxiliaries (physiotherapist, psychometrician, speech therapist, hearing aid specialist), tutors or teachers, plays his/her part in turn.

 
The BIAP recommends the “sensitisation” of all professionals likely to be involved with the child, for their observations, exactly like the parents’, are of primary importance in the detection of hearing and/or visual sensorial disorders in the child with multiple disabilities.  The same is true for the detection of disorders related to an apparently isolated deafness.

The BIAP recommends :

- continuous training for the professionals concerned
- early multidisciplinary care
- pooling of knowledge on rare disabilities and possible complications
- collaboration aiming at coherence within the team and the project for the child
- early parental guidance for “sensitising” parents to their child’s capabilities
(see recommendation 25-1).

The project must be elaborated together with the parents and take their priorities into account.  This partnership should be based on their fundamental wishes, according to the results of the most precise, in-depth assessments possible – neurological, psychological and neuro-psychological – with, in particular, detection of “emergences”.  Remedial treatment is possible only if the basic, positive elements of the assessment have been precisely identified.

The BIAP insists on the need to listen to the families, who are privileged observers of the child’s daily behaviour, and to accompany them in their questionings or anxieties in order to avoid “nomadism”, “diagnostic wanderings” or unjustified or inadapted therapies.

Announcing the suspicion, then the diagnosis, must be done tactfully.
 

More specific aspects of guidance :

Concerning parents :

- The medical assessment, being only progressive, will cause a certain splitting up of the child and of his/her problems and necessary care.  Every new examination is experienced as a new interrogation as to the future and so the plan for the child.  To mitigate this impression made on the parents, the BIAP recommends co-ordination between professionals.

- Parents, divided between different carers, often establish a more trusting relationship with one of them who then becomes the privileged contact, the “referent”.  It is important for this person to be aware of this mission and to assume it, or know how to guide parents towards a person who may be more competent.  In the light of certain priorities, the “referent” may change, and the parents’ choice must be respected.

- Certain handicaps are easier to face than others and can constitute a “fall-back handicap”.  It is inadvisable under pretext of telling the truth, to destroy a precarious balance ; hence the importance of guidance adapted to the parents’ state of mind at any given time.

- The particular situation in the case of fitting a cochlear implant requires precise information including the necessary reserve as to results in face of parents’ expectations (see recommendation CT 07).

* Certain handicaps remain unidentified.  Only the evolution of the pathology and also of our knowledge, will allow us, little by little, to complete the assessment.  It is important to take all the elements into consideration for better care or prevention.

* The multiplicity of handicaps renders parents even more fragile.  Accompanying them with guidance is thus more difficult.  Professionals are brought into question, confronted with their limits and the limits of their knowledge : they have to remain modest.

* Psychological support for professional teams is necessary.  To cope with the slow progress or lack of evolution, they need a place in which to express their doubts, difficulties and weariness…

Passage from adolescence to adulthood :

Parental guidance and the formation of teams are still of primary importance at the adult stage.  Continued care, with the maintenance of all the augmentative or alternative strategies, is justified in order to avoid causing a regression of acquisitions and an ignorance of certain complications related to the evolution of the pathology.