FIRES syndrome and speech therapy
By Lauriane Venin-Consol, speech therapist, especially with children with autism
Speech therapy is essential in the treatment of children with FIRES.
Apart from epilepsy, which is seen amongst FIRES patients, children affected by FIRES also present many disorders. The most common are:
• The loss of speech (despite no apparent problems on a functional level) which is sometimes, but not always, linked with motor disability
• A very restricted use of words
• Behavioural disorders, hyperactivity, loss of social and relational landmarks, loss of immediate memory, word and gesture repetition, loss of spatiotemporal landmarks.
• Upon seeing children who have previously been able to speak normally and go to school (and sometimes are still going) but now cannot, we must ask what role can speech therapy play in the recovery process?
• Are there any specialist speech therapists for this type of disorder and how can parents find them?
In France, the “Certificat de Capacité d’Orthophoniste” (Speech therapist certificate, which this year became a Master 2 in speech therapy) is a qualification that offers varied re-education methods and support. (See “nomenclature générale des actes” http://www.ameli.fr/fileadmin/user_upload/documents/NGAP_14_02_2013.pdf page 68, French only)
Speech therapy is not a FIRES specific solution however, especially in large cities, some speech therapists choose to specialise their training in one particular field. Consequently, they tend to treat more patients affected by that one pathology.
As a result some speech therapists are trained in some specific methods, that aren’t taught in normal speech therapy training. (Makaton, PECS , Padovan, DNP, ABA, Gestion Mentale, Logico-mathématique, Ostéovox…). Some training institutions have a list of speech therapists who have qualified in their courses.
For parents the easiest option is to contact a local speech therapist who will, in turn, get in touch with their network to find a speech therapist trained with the specific skills required. Speech therapy is one of the areas in the medical field where people most often take part in specialised training.
• Autistic children often are epileptic and,sometimes, children affected by FIRES can develop autistic behaviour. Which tools and methods do you use with autistic children that could also be effective for children affected by FIRES?
I will speak here about my experience with children affected by autism. Patients with other disorders won’t have the same needs. I will only speak here about a few leads, because there are as many care projects as there are children, and a wide-range of methods.
For “challenging” behaviour, organising time and space is essential in the support of autistic children. This aims to help the child to plan, anticipate and organise their environment. Vertical visual charts presenting a series of activities during the day are often used. It could be the photo of familiar places or a photo of someone. When a child has a lower level of distraction, the plan can be made with pictograms or sentences. Often, it is possible to Velcro the pictures, so when the activity is finished, the picture of the activity can be removed.
I organise the speech therapy sessions numerically. The child can then see what activities are coming. I also use big hour glasses to show how long an activity is going to last (from 30 sec to 15 minutes). All this significantly helps reducing what are, incorrectly, known as “behavioural disturbances”.
For children who speak just a little or not at all, I use signs from the Makaton method and some pictograms. The idea of this method is to sign the key words in a sentence while enunciating them.
This helps a child to visualise words which, without this method, are mixed with all other words (phenomenon known as “speech co-articulation”). This also naturally leads the speaker to slow down his speech. This method is then either an augmentative one (which allows the speech development) or a palliative one (in which case a child starts using sign language without association to speak). Moreover, in most cases, the signs help to support the understanding of speech.
For other children, the PECS method will be more useful. Its idea is to communicate by swapping pictures (photos, pictures, pictograms). Sometimes children prefer a method of communication using item swapping as it feels more real.
– a child’s motivation is key in our “small educative victories”, experienced in session after session. I use lots of “reinforcers” specific to each child because they do not always have the same values as us. For instance, I can put a desired item in a child’s third basket (a sensorial item, a desk-game that the child has spotted, some bubbles, a sweet if the child is only sensitive to food motivation at that time, an iPad…). The child then knows what he is working for and so will agree more readily to the activities offered in basket 1 and 2.
– Also, it is important to highlight the development of technologies that are more specific to children who cannot communicate with speaking: speech synthesisers, electronic communication tables, digital tablets… For instance, there are some reasonably priced, effective communication tables on the iPad, which gas the added advantage of being light and easy to carry.
Therefore, a speech therapist’s role is to choose, with the agreement of the family, which “tool box” or method will be best for their child. Also, it is important to frequently adjust the methods and to develop some “made to measure” methods, because each and every child is unique and full of surprises!