Autism: a mother’s perspective

Tisha Steyn – George – The Legacy Centre and non-profit organisation.

Binah is presenting the centre’s second Big Walk on Sunday 15 April. Binah is presenting the 4.8 km fun walk in the Garden Route Botanical Gardens to grow awareness for families with children on the autism spectrum.

The Legacy Centre, which opened on 1 August 2016, was created by Mariza van Deventer and husband Johan for the care and tutoring of their son Migael (then 10) and other children with special learning needs.  Migael suffers from a rare metabolic defect Phenylketonuria (PKU), but is also on the autism spectrum.

At that stage, Migael and one other 10-year- old autistic boy received one-on-one education at the centre. The number of children has since grown to 12 children between the ages of 4 and 11 who are not able to function in a mainstream educational situation. The centre employs five full-time teachers, a biokineticist who plans individual exercise programmes, and a music therapist.

What is autism and how does it manifest

“It is not yet clear what causes autism,” said Mariza, “but it influences information processes in the brain in the way in which nerve cells and nerve cell bridges are connected and organised. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM), autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified, should be given the diagnosis of autism spectrum disorder. 

Autism is a neurobiological development disorder that may be, but is not necessarily, characterised by:

  • Limited social interaction
  • Little of no eye contact
  • Limited verbal and non-verbal communication
  • Repetitive and stereotypical behaviour
  • Meltdown caused by overstimulation by crowds and noise. The meltdown resembles a naughty child’s tantrum, but in the case of the autistic child he has no control over the reaction. In such circumstances the child may react violently by slapping, screaming or even head-batting, which could lead to self-injury. “I have found that it helps to calm down the child by hugging him tightly in a specific manner,” said Mariza. 

Challenges

According to Mariza it is a big challenge to work and live with an autistic child. “The statement that ‘when you meet one autistic child, you have met only one autistic child’ is very true. That is probably why autism is such a challenging developmental disorder.”

Experience has taught her that any “invisible disorder” is difficult to live with. “The public at large simply doesn’t understand. Johan and I recently watched the film Raaiselkind and we were deeply touched. It was a very emotional experience to see so much of your own life displayed on the big screen, even if that family is portrayed as experiencing an extreme situation. Johan summed it up when he said: ‘There is nothing beautiful about the film, but everything is true’.”

“I can tell you what I miss most: to accompany Johan to church. It may sound uncomplicated, but Migael is overwhelmed by the large number of people and the loud music in a church. That aspect was brilliantly portrayed in Raaiselkind: the congregation saw that the mother was having a breakdown, but did nothing to help her. And that is exactly when one needs help.”

Isolation

The biggest challenge is becoming isolated. “Parents of children with special needs are easily isolated because of the public’s lack of understanding. Instead of going out, you rather stay in the safe bubble of your home where you are in charge.” 

“It is too unpredictable to for instance take your child to a shopping centre where he may experience sensory overload. It is impossible to predict your child’s reaction on a specific day. Some days all will be well, but the next time he may experience a meltdown – and your day will be cancelled.”

Support network

A support network is of utmost importance. “Yet it is difficult to create such a support network, because whoever helps you must know how to handle your child.”

Education is another huge challenge. “I don’t have to explain the normal education situation is in at present – it is much worse for children with special educational needs. This forces parent to seek out a centre like ours, and not everybody can afford it. School fees are expensive as we need more staff to facilitate one-on-one tutoring.”

What happens at Legacy Centre?

Besides each child’s individual curriculum, they are also using the specially designed Gemiini programme. This programme is based on discrete video modelling, which focuses on a single concept at a time. Association is done by repeatedly showing an image and saying the word.

Once a week the children do horse riding, twice a week they swim, and twice a week they also receive music therapy in small groups of one to three. “The latter has been the best addition to our curriculum!”

They also work in their vegetable garden. “They derive a lot of joy from planting, harvesting and eating their own vegetables.”

The children also learn to make pancakes and pizza and bake biscuits. “The baking and cooking is a special treat and they enjoy every moment of it. Their personalities are developed through working, playing and learning life skills.”

Positive outcomes include parents getting to know and support each other. “The children are very fond of each other, and it is wonderful to see how they become more independent.”

The aim of the dedicated tutoring is to cognitively stimulate the children and to teach then life skills to enable them to function independently. “Migael is allowed to help Johan at his truck washing business, and as a reward he visits his favourite restaurant afterwards.”

 Migael’s Talking Tablet

The app consists of various icons on the screen. When Migael clicks on an icon, a boy’s voice in Afrikaans says what the icon represents. “The icons include things he loves, questions that he may want to ask, and what he would like to eat. The app will be continuously developed, but at present Migael is learning that the app is his ‘voice’. He received the app on 22 March, and he enjoys ‘telling’ us which of his favourite foods he would like to eat.”

Say hello and wave

Like all parents of children with disabilities, Mariza finds it difficult to handle the public’s reaction. “It’s the usual thing of people who accept your child is throwing a tantrum, while in fact he is having a meltdown as a result of sensory overload,” explained Mariza.

“I have a problem with children who stare – it shows their parent don’t teach them that some children are ‘different’. I often observe the parents being ashamed and telling their children ‘not to look’. The correct action is to simply say hello and wave.”

When Migael accompanies Mariza and Johan on a flight or visit an unfamiliar place, he wears a T-shirt with the words “Autism is my superpower” and “I’m autistic. Smile and say Hi!” “It really works, because one can see how people read it, take it in and understand.”

The Legacy Centre is open throughout the year and only closes for the December holidays.

The Big Walk on 15 April starts at the Botanical Garden’s main entrance in Caledon Street. Entrance fees are R50/adult and R20/child under 12.

Contact Mariza van Deventer at 083 270 6382 or binahnpo@gmail.com for more information. Visit Binah and Legacy Centre on facebook.


Outisme: ‘n Ma se verhaal

Tisha Steyn – George – Die Legacy-sentrum en nie-winsgewende organisasie, Binah, se tweede Big Walk word op Sondag 15 April aangebied.

Die 4.8 km pretstap in die Tuinroete Botaniese Tuin word aangebied deur Binah, om bewusmaking te skep vir families met kinders op die outismespektrum.

Die Legacy Centre, wat 1 Augustus 2016 op George geopen het, is deur Mariza van Deventer en haar man Johan geskep vir die versorging en onderrig van hul seun Migael (toe 10) en ander kinders met spesiale onderrigbehoeftes. Migael, wat aan ‘n seldsame metaboliese defek Phenylketonuria (PKU) ly, is ook op die outismespektrum.

In daardie stadium is Migael en een ander 10-jarige seun op ‘n een-tot-een-basis by die skool onderrig, maar intussen het die getalle aangegroei tot twaalf leerders van  4 tot 11 jaar oud, wat nie in hoofstroom-onderrig situasies kan funksioneer nie. Daar is tans vyf voltydse onderwysers,‘n biokinetikus wat individuele oefenprogramme vir elke kind opstel, en ‘n musiekterapeut.

Wat is outisme en hoe manifesteer dit

“Dit is nog nie heeltemal duidelik hoe dit gebeur of ontstaan nie,” se Mariza.  “Outisme beïnvloed inligtingsprosessering in die brein deur die manier te verander waarop senuselle en senuselbrûe verbind en georganiseer word. Dit is een van drie steurings wat volgens die nuutste uitgawe van die Diagnostiese en Statistiese Handleiding van Geestesteurings (DSM) onder die outismespektrum val; die ander twee is Aspergersindroom en ontwykende-ontwikkelingsteuring.” 

Outisme is ’n neuro-biologiese ontwikkelingsteuring wat deur die volgende eienskappe gekenmerk kan word, maar nie noodwendig nie:

  • Beperkte sosiale interaksie
  • Min tot geen oogkontak
  • Beperkte verbale en nie-verbale kommunikasie
  • Herhalende en stereotiepe gedrag
  • Oorstimulering deur baie mense en geraas, wat lei tot ‘n “meltdown” wat lyk soos ‘n tantrum, maar wat nie deur die outistiese kind verhelp kan word nie. Sommige kinders sal klap, skree en selfs hulself beseer deur byvoorbeeld kop te kap.  Dit help om ‘n kind op ‘n spesifieke manier styf vas te hou totdat hy kalmeer.

Uitdagings

Volgens Mariza is dit ‘n groot uitdaging om met ‘n outistiese kind te leef en te werk.  “Die stelling dat wanneer jy een kind met outisme ontmoet, het jy een kind met outisme ontmoet, is regtig waar. Dit is waarskynlik wat outisme so ‘n uitdagende ontwikkelingsteuring maak.”

Uit ondervinding weet sy dat enige “onsigbare gestremdheid” dit moeilik maak vir die wat daarmee saamleef. “Die samelewing verstaan net nie. Ek en Johan het onlangs Raaiselkind gaan kyk en ons was albei doodstil daarna.  Dit was baie emosioneel om soveel van jou lewe op ‘n groot skerm te sien.  Wat daardie gesin beleef het, was wel die ekstreem. Soos Johan sê daar was niks mooi aan die film nie, maar dit is alles waar.

“Ek kan vir jou sê wat ek mis: Om saam met Johan kerk toe te gaan.  Dit klink so eenvoudig, maar die baie mense en harde musiek is sensories net te veel vir Migael.  Die aspek is skitterend in Raaiselkind uitgebeeld: die kerk wat gesien het hierdie ma breek, maar niks gedoen het om te help nie.  En dis juis waar mens dink jy hulp moet kry.”

Afsondering

Een van die grootste uitdagings is dat jy afgesonder raak. “Ouers van kinders met spesiale behoeftes word so maklik geïsoleer omdat die samelewing nie verstaan nie. Jy bly in jou veilige ‘bubble’ by die huis omdat jy daar in beheer is.

“Dit is net te onvoorspelbaar om jou kind na byvoorbeeld ‘n winkelsentrum te neem want dit is vir hom sensories oorweldigend.  Jy kan nie voorspel of jou kind dit op ‘n gegewe dag sal kan hanteer nie.  Dalk gaan dit wonderlik, of dalk kry hy ‘n ‘meltdown’ en jou dag is gekanselleer.”

Ondersteuningsraamwerk

Volgens Mariza is ‘n ondersteuningsraamwerk baie belangrik, “maar dit is moeilik om aanmekaar te sit. Wie jou ook al ondersteun moet weet hoe om jou kind te hanteer.”

Onderwys is nog ‘n ander groot uitdaging.  “Dis onnodig om te verduidelik hoe ons onderwys in die algemeen lyk, wat nog te sê vir kinders met spesiale behoeftes.  Dit noop ouers om hulle kinders na sentrums soos ons s’n te stuur en nie almal kan dit bekostig nie.  Die skoolgeld is duur want ons moet meer personeel aanstel omdat een-tot-een onderrig noodsaaklik is.”

Wat gebeur by Legacy Centre

Volgens Mariza doen die kinders bykomend tot hul individuele leerplanne ook die Gemiini program. Die leerprogram is gebaseer op “discrete video modeling”, wat ‘n enkele konsep met klank en beeld toelig ten einde konsepte te assosieer.

Een maal per week ry die kinders perd, en twee maal per week swem hulle. Hulle kry ook twee maal per week musiekterapie in groepies van twee of drie, of selfs individueel. “Laasgenoemde was die beste toevoeging ooit tot ons kurrikulum!”

Hulle werkskaf ook in ‘n groentetuin. “Die groentetuin verskaf vir hulle soveel plesier om die groente te plant, te pluk en te eet!” Hulle word geleer om koekies te bak,  pizza en pannekoek te maak.  “Dis groot bederf en hulle geniet elke oomblik daarvan. Deur werk, speel en lewensvaardighede word hul persoonlikhede ontwikkel.”

Van die positiewe uitkomste is dat die ouers mekaar leer ken en ondersteun. Die kinders is ook baie geheg aan mekaar. “Dis lekker om te sien hoe die kinders meer selfstandig raak.”

Die uiteindelike doel met die onderrig is om die kinders kognitief te stimuleer en hulle lewensvaardighede te leer sodat hulle selfstandig in die samelewing kan funksioneer.  Migael is geleer dat hy Saterdae by Johan se trokwassery mag help en as belonging Spur toe te gaan.

Migael se “Talking Tablet”

Mariza  en Johan het besluit om vir Migael alternatiewe kommunikasie te leer omdat hy grotendeels nie-verbaal is. “Ons het vir hom ‘n tablet gekoop waarop sy spraakterapeut ‘n toepasing spesifiek vir hom ontwikkel het.”

Die toepassing bestaan uit verskeie ikone op die skerm, en as hy daarop druk, sê ‘n seunstem in Afrikaans wat die ikoon verteenwoordig. “Dit sluit in goed waarvoor hy lief is, vrae wat hy wil vra, en wat hy wil eet. Die toepassing sal voortdurend ontwikkel word, maar vir nou leer hy dat dit sy ‘stem’ is. Hy het die Talking Tablet op 22 Maart ontvang en hy geniet dit om vir alles wat lekker is om te eet, te vra.

Sê hallo en waai

Soos alle ouers van kinders met gestremdhede is dit moeilik om die publiek se reaksie te hanteer. “Dis maar die gewone gevalle van mense wat dink jou kind gooi ‘n vloermoer, maar inderwaarheid het hy ‘n ‘meltdown’ as gevolg van sensoriese oorlading,” verduidelik Mariza.

“Kinders wat staar is vir my sleg.  Dit beteken dat hulle ouers hulle nie leer dat daar kinders is wat ‘anders’ is nie.  Ek het al hoeveel keer gesien dat die ouers skaam kry en hul kinders aansê om ‘nie te kyk nie’. Die korrekte optrede is om hallo te sê en te waai.”

Wanneer hulle Migael saamneem op ‘n vlug of na ‘n vreemde plek gaan, dra hy ‘n T-hemp waarop geskryf staan: “Autism is my superpower” en “I’m autistic. Smile and say Hi!” “Dit help regtig, want jy kan sien hoe mense die slagspreuk lees, inneem en verstaan.”

Die Legacy Sentrum is reg deur die jaar oop en sluit net vir die Desembervakansie.

Die Big Walk begin om16:00 by die hoofingang in Caledonstraat. Inskrywingsfooi beloop R50 vir volwassenes en R20 vir kinders onder 12.

Kontak Mariza van Deventer by 083 270 6382 of binahnpo@gmail.com vir meer inligting. Besoek ook Binah en Legacy Centre op facebook.

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