Foundation Van ezel tot muur
Briefly explained, Landau-Kleffner syndrome is a rare, severe epilepsy syndrome that begins in childhood. During the night, there is constant epileptic activity in the speech-language areas of the brain. This often causes problems in speech-language development. Some children no longer speak at all and no longer seem to understand anything. As a result, children with this epilepsy syndrome are sometimes initially mistakenly assumed to be deaf.
The Continuous Slow Waves during Sleep syndrome, also called the CSWS syndrome, is very similar to the Landau Kleffner syndrome. CSWS and sometimes LKS are also called Electrical Status Epilepticus during Sleep (ESES) or nowadays summarized with other related syndromes under the name Developmental and Epileptic Encephalopathy with Spike-wave Activity in sleep (D/EE-SWAS).
Much is still unknown about these syndromes, which is why this foundation is important to support these children and their loved ones.
Naming
The name of the ‘Van ezel tot muur’ foundation may at first seem to have nothing to do with a condition, disorder or disease. but nothing could be further from the truth! It refers to our activities and, in addition, to Landau-Kleffner syndrome (LKS) and its consequences, such as speech-language disorders, non-congenital brain injury (NAH), depression, autism, and attention deficit disorder (ADD). These are related congenital and/or acquired conditions, diseases and disorders that are common in (former) patients with LKS.
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The Dutch saying: A donkey does not stumble twice at the same stone (wall): means that a person does not make the same mistake a second time. From the first mistake you have learnt to do things differently. (Former) patients are often dismissed in society as stupid because of speech-language problems and so they keep ‘bumping into’ the same kind of ‘brick wall’, We would like (former) patients to stop ‘bumping into’ themselves and for other people not to make the same mistake a second time to stigmatise (former) patients.
Th Dutch saying: Being sent from cabinet to wall: this proverb expresses that people are sent from one thing to another without any result. Being sent back and forth unnecessarily and without result. Often (former) patients with LKS are stigmatised and ‘sent from cabinet to wall.’
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The Dutch saying: Donkey ear: a donkey ear is a folded corner of a page from a book to help you remember where you were. A donkey ear helps you remember the information or text on a page in a book or magazine, for example. As a result of LKS, patients often retain NAH, which manifests itself in various ways; including forgetfulness. To control forgetfulness, you will benefit from ‘donkey ears’.
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Mnemonic devices (in Dutch: donkey bridge): mnemonic devices are there to help people remember information more easily, better, longer and in more detail. People with speech-language problems and NAH benefit greatly from mnemonic devices. It makes remembering information easier.
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Painter's easel (easel and donkey are two different meanings for the same word in the Dutch language: ezel): a painting goes from the easel to the wall. With art, everyone can communicate and it helps to be positive in life. That is why our projects are art-related and that is what the painter's easel symbolises. Art is a way to express and communicate without the need for speech/language skills, a pure form of communication for everyone.
The donkey: A donkey has more qualities than what it is known for, for example, a donkey is a sweet, headstrong and above all smart animal, while the donkey is often mistaken for stupid and strange. There is more to it than first meets the eye. This too is a link to (former) patients, they too are often underestimated. Also, it is a pack animal: the donkey can carry a heavy weight just like LKS (ex-) patients and their loved ones have to.
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The stubborn powerful donkey as a great strong friend.