My body learns a lesson.

This is originally written in Afrikaans (https://mysilentvoice.blog/2021/07/21/my-lyf-leer-n-les/) and was translated to English by Mom.


It is not every day that we can do stuff like other families.

Because my body is the way it is, we often have to stay home when other people do not have to stay home. My body makes it hard to do things like other people do. Even ordinary things are not easy for me.

My family is used to it, but people who do not know us, do not understand it at all.

My body is not my friend, like that kid in the S2C video spelled (Overview of Spelling to Communicate https://i-asc.org/families/videos/ ) . My body is especially a problem when we want to do something other than normal, then my body is completely overwhelmed. So, doing something else is not easy. My body wants to let me down if I do not prepare my body well for change.

My body is not my best mate if I do not keep him pretty calm.

Change makes me nervous.

When we do something different than usual, my body does not want to cooperate. My body is then my biggest obstacle. Even though my body is normally difficult to control, it is much more difficult to control in such circumstances where we could not prepare my body. So, tackling a new thing is my biggest challenge.

This weekend we moved with our sheep from our summer farm to our winter farm, Ashoek. It’s something that also affects me, because my body also feels when it’s time for the sheep to move. I feel their haste over them wanting to get to where it’s warmer. My overwhelmed body does not handle the cold well either.

My dad and sister usually trek (move) the sheep along with the workers. This year we all went together because my mom wanted to help me because we had not done it together before. I really wanted to go with the previous times. Because we did not know if we would be able to handle me, as well as working with the sheep, I always stayed at home in the past when the sheep were being moved.

My mom is not brave when it comes to strange situations, with me, because we have had a lot of trouble with my body in the past. My mom is not worried without good cause. She has had to struggle a lot with me in strange situations. Now that we can communicate with each other, we can talk about it, but it still does not take away the memories of the events from the past when we did not understand each other. It will still take a lot of chatting to fix it all.

My story is about the good weekend we had together as a family while we moved the sheep.

My dad was my biggest supporter. He wanted to take me along, but my mom also had to go along to help me see if everything was al right. We are much calmer now than we used to be because my family now understands me better.

Because we can now tell each other what is bothering us, we can handle the strange situations better.

My dad is still struggling because we can not quite talk to each other yet, but he understands all that is happening.

My family is used to all my funny manners, but when we get into such strange circumstances, then my manners are even stranger than usual.

If we can not tell each other what is going on, they will never understand what is happening to me.

Sometimes it seems like we are crazy, but we are working on a plan to manage my body so that my body does not get out of control. Mom is already so good at seeing what happens. Sometimes you will think we are torturing me, the way I act out, but then my heart is actually very happy about something and my body just can not let my joy look like joy. My mom can already see nicely when I’m really happy, even though I seem sad.
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My body is very silly with my emotions .

All my emotions are in place and I understand all my emotions but my body does not respond to emotions as we think it should react. Even though it’s such a mess, my mom already knows most of the time what’s going on.

It’s just because my mom can talk to me about what she’s seeing happen and I can tell her what emotions I’m feeling while my body reacts that way. It makes me feel safe, even in unfamiliar situations.

These are all my biggest dreams coming true. With my family, we will be able to overcome any obstacle. We still stress each other out sometimes, but we also help each other right again soon.

This is why my body has learned a lesson, because if my family is with me, we can help each other now.

My family can help me now when we get into unknown situations and

it makes me feel safe,

because we can talk to each other.

My family is now my calm in unfamiliar situations.

My lyf leer ‘n les.

Dit is nie al dag dat ons goed kan doen soos ander gesinne nie.

Omdat my lyf is soos hy is, moet ons dikwels maar tuis bly wanneer ander mense nie hoef tuis te bly nie. My lyf maak dat dit moeilik is om mooi goed te doen soos ander mense dit doen. Selfs gewone goed is nie maklik vir my nie.

My gesin is al gewoond daaraan, maar mense wat ons nie ken nie verstaan dit glad nie.

My lyf is nie my vriend nie, soos daardie kind in die S2C-video spel (Overview of Spelling to Communicate https://i-asc.org/families/videos/ ). My lyf is veral ‘n probleem wanneer ons iets anders as normaal wil doen, dan is my lyf heel oorstuur. So, om iets anders te doen, is nie maklik nie. My lyf wil my in die steek laat as ek nie my lyf goed voorberei op verandering nie.

My lyf is nie my beste maat as ek hom nie mooi kalm hou nie.

Verandering maak my senuweeagtig.

So, as ons iets anders doen as gewoonlik, wil my lyf nie saamwerk nie. My lyf is dan my grootste struikelblok. Al is my lyf normaalweg ook moeilik bestuurbaar, is dit in sulke omstandighede waarop ons nie my lyf kon voorberei nie, nog baie moeiliker bestuurbaar.

Om ‘n nuwe ding aan te pak is my grootste uitdaging.

Ons het hierdie naweek met ons skape getrek van ons somersplaas na ons winterplaas, Ashoek, toe. Dit is nogal ‘n gedoente wat my ook raak, want my lyf voel ook aan as dit tyd is vir die skape om te trek. Ek voel hul haastigheid oor hulle wil kom waar dit warmer is, oor my oorstuurde lyf die koue ook nie goed vat nie.

My pappa en sussie trek gewoonlik die skape saam met die werkers. Hierdie jaar het ons almal saam gegaan, want my mamma wou my help oor ons dit nog nie voorheen saam gedoen het nie. Ek wou baie graag altyd saam getrek het, maar omdat ons nie geweet het of ons my sal kan hanteer nie, saam met die werkery met die skape nie, het ek in die verlede altyd by die huis gebly wanneer die skape getrek word.

My mamma is nie dapper as dit by vreemde situasies kom, met my nie, want ons het al baie moeilikheid gekry met my lyf in die verlede. My mamma is nie om dowe neute benoud nie. Sy moes al baie sukkel met my in vreemde situasies. Nou dat ons met mekaar kan kommunikeer, kan ons daaroor gesels, maar dit vat nog nie gebeure van die verlede weg toe ons mekaar nie verstaan het nie. Dit sal nog baie gesels kos om dit alles reg te maak.

My storie gaan oor die goeie naweek wat ons gehad het saam as gesin terwyl ons die skape getrek het.

My pappa was my grootste ondersteuner oor die saamganery. Hy wou my saam vat, maar my mamma moes ook saam gaan om my te help kyk of alles in die haak is. Ons is nou al baie rustiger as wat ons was omdat my gesin my nou beter verstaan.

Omdat ons mekaar nou kan vertel wat ons pla, kan ons die vreemde situasies beter hanteer.

My pappa sukkel nog omdat ons nog nie heeltemal met mekaar kan gesels nie, maar hy verstaan al wat gebeur.

My gesin is al my snaakse maniere gewoond, maar as ons in sulke vreemde omstandighede kom, dan is my maniere nog vreemder as gewoonlik.

As ons nie vir mekaar kan sê wat aangaan nie, sal hulle nooit verstaan wat met my gebeur nie.

Soms lyk dit asof ons nie reg is in ons koppe nie, maar ons is besig met ‘n plan om my lyf te bestuur sodat my lyf nie vir ons ore aansit nie. Mamma is al so goed daarmee om te sien wat gebeur, want soms sal jy dink ons is besig om my te martel soos ek te kere gaan, maar dan is my hart eintlik baie bly oor iets en my lyf kan nie my blydskap soos blydskap laat lyk nie. My mamma kan al mooi sien wanneer ek regtig bly is, al lyk dit asof ek hartseer is.

My lyf is baie simpel met my mooi emosies.

Al my emosies is in plek en ek verstaan al my emosies, maar my lyf reageer nie op emosies soos wat ons dink dit moet reageer nie. Al is dit so ‘n deurmekaar spul, weet my mamma nou al meeste van die tyd wat gebeur.

Dit is net omdat my mamma met my kan praat oor wat sy sien gebeur en ek kan vir haar vertel watter emosies ek voel terwyl my lyf so reageer. Dit laat my veilig voel, selfs in vreemde situasies.

Dit is al my grootste drome wat waar word. Saam met my gesin, sal ons enige struikelblok kan oorkom. Ons oorstuur mekaar nog soms, maar ons help mekaar ook gou weer reg.

Dit is waarom my lyf ‘n les geleer het, want as my gesin by my is, kan ons mekaar nou help.

My gesin kan my nou help as ons in vreemde situasies kom

en dit laat my veilig voel

omdat ons met mekaar kan praat.

My gesin is nou my kalmte in vreemde situasies.

My Dad is my hero

Origanally written in Afrikaans. Translated to English by Mom and Google Translate. Please scroll down for English version.

My pa is my hero

My pa is ‘n gewone pappa wat ‘n ongewone seun gekry het.

Dit was nie wat my pappa wou hê nie, daarvan is ek oortuig.

My pappa is ‘n boer wat nie hou van maniere wat nie mooi is nie en my maniere was nog nooit mooi nie. My pappa is ‘n man wat my moet leer van allerhande boerdery dinge, maar ek kan niks self doen soos wat hy sou wou hê nie. My pappa is ‘n man wat hou van baie praat en ek kan nie ‘n enkele woord sê nie. My papa hou van mansdinge soos braai en bier drink, maar ons sal dit nooit saam kan doen nie. My pappa soek ‘n seun wat hy nie gekry het nie.

My pappa is my hero, want al is ons so heeltemal verskillend, is hy my grootste ondersteuner saam met my mamma.

My pappa het sy droom, van ‘n seun wat saam met hom kan boer, laat vaar. My pappa het sy droom van ‘n seun wat saam met hom kan gaan jag en braai en bier drink en allerhande mansgoed saam met hom doen, laat vaar. My pappa het sy droom om ‘n seun te hê met wie hy kan gesels en wie terug gesels, laat vaar.

MAAR my pappa het MY droom laat waar word om ‘n pappa te hê

wat my verstaan,

wat saam met my speel en

wat my maat kan wees.

Die grootste ding wat my pappa vir my gedoen het, is om saam met my S2C (Spelling to Communicate) te doen sodat hy ook mooi kan hoor wat ek dink en wil sê vir hom.

Dit is vandag my verjaarsdag. Ons beplan om koek te eet en saam te kuier, maar die heel beste geskenk vir my is my pappa wat nou verstaan hoe my kop en my lyf werk en my so aanvaar. Ons twee vul mekaar mooi aan, want my swakpunte is sy sterk punte en sy swak punte is my sterk punte. Saam maak ons ‘n goeie span.

My pappa is my hero,

want hy is so lief vir my,

al is ek nie wat hy graag sou wou hê nie.

My pappa is my hero,

want hy praat oor alles met my,

al kan my pappa nie hoor wat my reaksie is op wat hy sê nie.

My pappa is my hero

want, hy wie die ongeduldigste is wat ‘n mens kan kry,

het geleer om baie geduldig met my te wees.

My pappa is my hero,

al sê wie ook wat van hom.

Hy is my beste pappa waarvoor ek kan vra.

Dankie pappa vir wat jy vir my doen.

My father is my hero.

That was not what my dad wanted, I’m convinced.

My dad is a farmer who does not like ways that are not beautiful and my ways have never been beautiful. My dad is a man who has to teach me about all kinds of farming, but I can not do anything myself as he would like. My dad is a man who likes to talk a lot and I can not say a single word. My dad likes men’s things like barbecuing and drinking beer, but we’ll never be able to do it together. My dad is looking for a son he did not get.

My dad is my hero because even though we are so completely different, he is my biggest supporter with my mom.

My dad gave up on his dream of having a son who could farm with him. My dad gave up his dream of a boy who could go hunting and braaiing and drink beer with him and do all kinds of men’s things with him. My dad abandoned his dream of having a son with whom he could talk and who would talk back.

BUT my dad made MY dream come true to have a dad

who understands me,

who plays with me and

who can be my partner.

The biggest thing my dad did for me is to do S2C (Spelling to Communicate) with me so he can also hear nicely what I think and want to say to him.

Today is my birthday. We plan to eat cake and hang out together, but the very best gift for me is my dad who now understands how my head and my body work and accepts me that way. We two complement each other nicely because my weaknesses are his strengths and his weaknesses are my strengths. Together we make a good team.

My dad is my hero,

for he loves me so much,

even though I’m not what he would like.

My dad is my hero,

because he talks about everything with me,

even though my dad can not hear what my reaction is to what he says.

My dad is my hero

for, he who is the most impatient one can get,

has learned to be very patient with me.

My dad is my hero,

no matter who says what about him.

He’s the best dad I could ask for.

Thank you Dad for what you do for me.

I’m not a box full of broken parts.

  • THIS IS A TRANSLATION. IT WAS ORIGINALLY WRITTEN IN AFRIKAANS. SEE ” EK IS NIE ‘N BOKS VOL STUKKENDE PARTE NIE”.

Autism is not something I can shake off. It’s part of me, like the color of my hair is and my pretty eyes. I’m not someone who has autism.

Autism has been my whole life.

Without autism I am not someone, because we are who we are and that is who I am: I am an autistic young man.

But autism isn’t everything I am.

I’m also smart and funny

and I love people and animals

and stories and History and Science and Maths

and I like to devise and tell stories

and I like watching stories that have a good storyline

and I like to tell my own stories

And that’s who I am, too.

My life is not only autism, my life is also this other stuff that makes me who I am. So, though autism is my life, I’m also more than just autism.

My autism is my biggest obstacle, but also my biggest asset.

This is my Prison, but also my Freedom.

My life is a company with all sorts of shareholders holding different parts of my humanity in their hands. My being is beautifully braided together with the thread of autism running through it all. That’s what makes my life very difficult, but also interesting.

To just say I’m autistic is not to see my whole humanity.

It makes me very sad because it gives people a reason to squeeze me into a box that makes me feel like a box full of pieces that don’t work right. 

That’s how people see my autism: a box full of broken parts. That’s not who I am.

It is also my autistic friends’ problem, that they are not seen for everything that makes them beautiful and unique, but only as a box full of broken parts. My heart hurts a lot when I talk about this. It also makes my autistic friends’ lives difficult.

We’re whole, we’re not broken.

We are unique and we make things beautiful and exciting because we think in a different way than neurotypical people.

So, don’t measure us with benchmarks, which have been devised by people who think differently from us.

We are supposed to have limited insight, but who has limited insight when everyone is tarred with the same brush?  My own family is not treated with the respect they deserve because off treating me as a human being with future dreams and needs.

Autism is not my problem. What people think autism is, is my problem. My autism is not my best partner when I always have to try to turn myself and my humanity into someone who doesn’t act like an autistic person.

I’m autistic.

I’m not broken.

I’m not a box full of broken parts.

I’m a human being with many shareholders, not just autism.

Appreciate me for my whole being.

Ek is nie ‘n boks vol stukkende parte nie.

Outisme is nie iets wat ek kan afskud nie.   Dit is deel van my, soos wat die kleur van my hare is en my mooi oë. Ek is nie iemand wat outisme het nie,

Outisme is my hele lewe.

Sonder outisme is ek nie iemand nie, want ons is mos wie ons is en dit is wie ek is: ek is ‘n outistiese mooi jong man.

Maar outisme is nie alles wat ek is nie.

Ek is ook

  • slim en snaaks
  • en mooi lief vir mense en diere
  • en stories en geskiedenis en wetenskap en wiskunde
  • en ek hou van stories uitdink en vertel
  • en ek hou van stories kyk wat ‘n goeie storielyn het
  • en ek hou van my eie stories oorvertel

En dit is ook wie ek is.

My lewe is nie net outisme nie, my lewe is ook hierdie ander goed wat my maak wie ek is. So, al is outisme my lewe, is ek ook meer as net outisme.

My outisme is my grootste struikelblok, maar ook my grootste aanwins.

Dit is my Tronk, maar ook my Vryheid.

My lewe is ‘n maatskappy met allerhande  aandeelhouers wat verskillende dele van my menswees in hul hande hou. My menswees is mooi in mekaar gevleg met die draad van outisme wat deur dit alles loop. Dit is wat my lewe baie moeilik maak, maar ook interessant maak.

Om net te sê ek is outisties, is om nie my hele menswees raak te sien nie.

Dit maak my baie hartseer, want dit gee mense ‘n rede om my in ‘n boksie in te druk wat my laat voel soos ‘n boksie vol  stukke wat nie reg werk nie.

Dit is hoe mense my outisme sien: ‘n boks vol stukkende parte.

Dit is nie wie ek is nie.

Dit is ook my outistiese vriende se probleem, dat hulle nie raak gesien word vir alles wat hulle mooi en uniek maak nie, maar net as ‘n boks vol stukkende parte. My hart raak baie seer as ek hieroor gesels. Dit maak my ook my outistiese vriende se lewens swaar.

Ons is heel, ons is nie stukkend nie.

Ons is uniek en ons maak dinge mooi en opwindendend, want ons dink op ‘n ander manier as neurotipiese mense.

So moenie ons met maatstawwe, wat deur mense wat anders dink as ons, uitgedink is, meet nie.

Ons is veronderstel om beperkte insig te hê, maar wie het beperkte insig as almal oor dieselfde kam geskeer word? My eie gesin word nie met die respek hanteer wat hulle verdien nie, omdat hulle my soos ‘n mens met toekoms drome en behoeftes behandel.

Outisme is nie my probleem nie. Wat mense dink outisme is, is my probleem. My outisme is nie my mooiste maat as ek aanmekaar moet probeer om myself en my menswees te verander in iemand wat nie soos ‘n outistiese persoon op tree nie.

Ek is outisties.

Ek is nie stukkend nie.

Ek is nie soos ‘n boks vol stukkende parte nie.

Ek is ‘n mens met baie aandeelhouers, nie net outisme nie.

Waardeer my vir my hele menswees.

My plans for 2021

My planne vir 2021 is:

Originally written in Afrikaans. Translated by mom. Please scroll down for English.

Nicolaas & Hondjie

1. My lyf kort beter maniere.

Dit is lastig as ek nie my lyf kan beheer nie en ek pla ander mense met nonsense en, nog erger, as ek hulle seer maak. Ek probeer al my hele lewe lank beheer daaroor kry, maar hierdie jaar het ek meer moed as ooit tevore, want my gesin verstaan uiteindelik wat gebeur met my lyf en aanvaar my en bemoedig my en help my so mooi as ek sukkel. My hele gesin ondersteun my so mooi en, behalwe daarvoor, glo ek die Here gaan my beter laat mooi vertel van Sy grootheid deur my te help.

2. Ek wil met my hondjie ‘n band opbou.

My hartsbegeerte was altyd om ‘n troeteldier van my eie te hê en my pappa en sussie het my so bly gemaak toe hulle vir my ‘n hondjie gaan kry het. Hondjie is die mooiste, oulikste en spelerigste en vraatsigste wat ek al ooit gesien het. Ek voel so goed soos die rykste man in die wêreld nie kan hoop om te voel oor al sy skatte nie. Ek wil graag hierdie jaar ‘n band opbou met Hondjie sodat hy my sal leer  verstaan al kan ek nie met hom praat soos mense gewoonlik met honde praat nie.

3. Ek wil my mamma help om nog kinders te vertel van Spelling to Communicate,

want ek gun al my non-speaking vriende die lewe wat ek nou het. Ek wil ten minste nog 10 mense help sodat hulle nog 10 ander kan help, want so gaan ons dit regkry dat ons nog non-speaking vriende ook leer kommunikeer.

4. Ek wil leer skaak speel

sodat ek met my vriendin, Stephanie, kan online skaak speel. Ek is so bly ek het ‘n vriendin wat my motiveer om nuwe goed aan te pak. So, ek wil graag haar uitnodiging om skaak te leer speel aanvaar en dit saam met haar aanpak sodat ons saam-saam ‘n skaakklub kan begin saam met ander non-speakers.

5. Ek wil ook ‘n boekklub begin saam met ander non-speakers.

Ek het gehoor hoe Elizabeth Vosseller my ma vertel hoe ‘n boekklub kan werk en ek is baie gretig om dit te probeer. My mamma behoort al jare lank aan ‘n boekklub. Dit lyk vir my so bitter lekker en ek sal ook graag dit wil ervaar saam met my vriende.

6. My lyf moet leer om nie so te oorreageer nie as ek my ontstel oor iets.

As ek wag, en met my mamma se hulp, eers gesels oor wat my ontstel het, dan gaan ek dit beter kan uitsorteer. My lyf vergeet nog soms dat ek kan kommunikeer en dan maak ek onnodig chaos sonder dat ek die probleem oplos en dan maak ek die situasie erger. As ek net eers onthou dat ek nou kan kommunikeer, dan sorteer ons tjop-tjop ons probleme uit. Ons is baie lief vir mekaar en wil mekaar graag help en mooi maak om die lewe vir ons almal beter te maak, maar as ons nie kan kommunikeer nie, werk dit nie goed nie.

Ek kan nou kommunikeer. Ek moet net oefen dat ek dit nie vergeet nie en dat ek die paadjies in my brein wat my lyf laat oorreageer kan doodvee, want ek het nou ander uitwegte en ek is dankbaar daarvoor.  

Mag 2021 my en my gesin en almal vir wie ons lief is en voor omgee,

se mooiste jaar wees.

Mag God ons bewaar en gesond hou.

Mooi wense vir almal wat my blog lees vir 2021 en dankie dat julle my help om my ervarings en planne te deel met die wêreld sodat ander kinders, soos ek, ook gehelp kan word. Dit is hoekom ek my diepste vrese en vreugdes met julle deel. Help my asseblief om ander non-speakers te bereik en hulle ook te help om my voorbeeld te volg en ‘n nuwe lewe – met kommunikasie – te lewe.

My plans for 2021 are:

1. My body needs better manners.

It’s tricky if I can’t control my body and I’m bothering other people with nonsense and, even worse, when I hurt them. I’ve been trying to gain control of it all my life, but this year I have more courage than ever before, because my family finally understands what happens to my body and accepts me, encourages me and helps me  beautifully when I struggle. My whole family supports me so beautifully and besides that, I believe the Lord is going to help to be able to better tell, about his greatness, by helping me.

2. I want to build a bond with my pup.

My heart’s  desire was always to have a pet of my own and my dad and sister made me so happy when they went to get me a puppy. “Puppy” ( The dog’s name is “Hondjie” which translates directly to “Puppy”)  is the most beautiful, cutest, most playful and greedy  dog I’ve ever seen. I feel as good as the richest man in the world can’t hope to feel about all his treasures. I would like to build up a bond this year with “Puppy” so he will be able to understand me even though I can’t talk to him like people usually talk to dogs.

3. I want to help my mom tell more kids about Spelling to Communicate,

because I whish for all my non-speaking friends the life I have now. I want to help at least another 10 people so they can help another 10 others, because that’s how  we’re going to get more non-speaking friends communicating as well.

4. I want to learn to play chess

so that I can play with my girlfriend, Stephanie, chess online. I’m so glad I have a friend who motivates me to tackle new stuff. So, I’d like to accept her invitation to learn playing chess and to tackle it alongside her  so that we can start  a chess club together for other non-speakers.

5. I also want to start a book club

with other non-speakers. I’ve heard Elizabeth Vosseller tell my mum how a book club can work and I’m very keen to try it. My mommy has belonged to a book club for years. It seems so enjoyable to me and I would also like to experience it with my friends.

6. My body must learn not to overreact when I’m upset about something.

If I wait, and with my mommy’s help, first talk about what upsets me, then I’m going to be able to sort it out better. My body still sometimes forgets that I can communicate and  I unnecessarily cause chaos without me solving the problem and then I make the situation worse. If only I remember being able to communicate now, we’re sorting out chop-chop our problems. We love each other very much and want to help each other to make life better for all of us, but if we can’t communicate, it doesn’t work well.

I can communicate now. I just have to practice not forgetting this and that I can wipe the pathways in my brain that let my body overreact because I have other ways out now and I’m grateful for it.

May 2021 be for me and my family and for everyone we love and care about,

the most beautiful year. 

May God keep us and keep us healthy.

Best wishes for everyone reading my blog for 2021 and thank you for helping me share my experiences and plans with the world so that other children, like me, can also be helped. That’s why I share my deepest fears and joys with you. Please help me reach other non-speakers and also help them follow my example and live a new life – with communication.

Bye bye, tablet, hello girlfriend.

Baai baai, tablet, hallo vriendin.

Scroll down for English version. Original in Afrikaans, translated by Mom.

Ek is so in my skik dat ek my tablet en selfoon kon los, want dit was die moeilikste ding wat ek nog ooit probeer het.

Ek is al baie keer vies gewees vir myself oor ek nie die ding kan uitlos nie. Dit is my grootste prestasie wat ek nog behaal het. My prys vir hierdie prestasie is ‘n ware vriendskap met ‘n vriendin.

Ek het altyd my tablet gesien as my vriend, maar ook my vyand omdat dit my gehelp het om te kalmeer, maar my ook angstig gemaak het.

Omdat ek nie kan praat nie, was my tablet my enigste geselskap. Nou is ek deel van ‘n ander wêreld wat heeltemal anders werk as toe ek nie kon kommunikeer nie. My tablet was maklike geselskap, want hy het nie terug gepraat of van mening verskil nie. My tablet het my nooit hartseer of kwaad gemaak nie, dit was net my eie reaksie wat ek mee moes “struggle”.

Nou is dinge anders, want ‘n vriendskap met ‘n mens is soveel meer gekompliseerd, want die ander persoon het ook ‘n wil van sy of haar eie en gevoelens en idees en planne. Nou is my vriendskap heeltemal anders en dit is vir my ‘n onbekende wêreld wat ek nog nie ken nie en dit is ‘n baie moeilike ding om uit te “figure”.

My hart is soms bang ek doen dit nie reg nie en soms is ek benoud dat ek my vriendin gaan verloor, maar ek leer nou hoe ‘n vriendskap in die pratende wêreld werk en dit is soveel beter as toe ek nie kon kommunikeer nie en net my tablet gehad het. Al is dit soms moeilik  en selfs vreemd vir my, bly die vriendskap met my vriendin steeds baie beter as met my tablet.

Ek het nog net een vriendin waarmee ek gereeld gesels. Ek hoop dit is die begin van nog vele ander vriendskappe vir my en vir haar, want ons het altwee jare se verlore tyd en vriendskappe om in te haal.

***

‘n Gedig wat ek vir my vriendin, Stephanie geskryf het en ‘n gedig wat sy terug geskryf het:

Non  – speaking friendship
By Nicolaas Paulsen  

I have a friend
I have a non-speaking friend
I have a friend who understands being   non-speaking
I have a non – speaking friend who understands being non – speaking  

And we chat with each other
About being non – speaking
Even though we are non – speaking  

Being non – speaking is solitude
Being non – speaking is silence
Being non – speaking is sometimes without friends  

Having a non – speaking friend makes all the difference  

Now I am not solitude’s victim
Now I am not my silence’s victim
Now I am not without a true friend.  

Having a non – speaking friend I can chat to, makes all the difference.  

Thank you Stephanie for being my friend
I love you as my friend and
I will always remember you  as my first non – speaking friend  
that I can chat with.
I love you for being my friend.    
Life’s true treasure
By Stephanie Pringle
 
Friends are gems
Too precious to hold    
          
Divine moonstones            
Glorious rubies
Majestic pearls  

Imagine having very few
How priceless they would be
                      
Ring of friends            
String of mates            
Crown of love  

Too valuable to measure
Life’s true treasure  

***

Bye bye, tablet, hello girlfriend.

I’m so pleased that I could let go of my tablet and phone. It was the hardest thing I’ve ever tried.

I’ve been frustrated with myself, many times, for not being able to leave the thing alone. This is my greatest achievement. My prize for this achievement is a real friendship with a girlfriend.

I always saw my tablet as my friend, but also my enemy because it helped me calm down, but also made me anxious.

Because I can’t speak, my tablet was my only company. Now I’m part of another world which is completely different from when I couldn’t communicate. My tablet was easy company because he didn’t speak back or differ from opinion. My tablet never made me sad or angry, it was just my own reaction that I had to struggle with.

Now things are different because a friendship with a human being is so much more complicated because the other person also has a will of his or her own and feelings and ideas and plans. Now my friendship is completely different and it is still an unknown world that I don’t know yet and it’s a very difficult thing to “figure out”.

My heart is sometimes afraid I don’t do it right and sometimes I’m distressed that I’m going to lose my girlfriend, but I’m now learning how a friendship works in the speaking world  and it’s so much better than when I couldn’t communicate and just had my tablet. Even though it is sometimes difficult and even strange to me, the friendship with my girlfriend remains much better than with my tablet.

I still have only one girlfriend I talk to regularly. I hope this is the beginning of many other friendships for me and for her, because we have both years of lost time and friendships to catch up on.

NON-SPEAKING JOY

My greatest day since being able to communicate, was SpellX 2020.

I have always dreamed of making my words be heard over the world so that people can hear what I have to say about my most beautiful words and the way my body and my disruptive ways are my prison. My words are now set free to fly all over the world. To explain how that makes me feel, is like trying to put spilled water in a glass with only one  finger to help: it is impossible!

 I am overjoyed. 

I am not only happy for myself, but also for ALL the other presenters and also for Stephanie and Zekwande, my friends from South Africa, who were such great hosts. 

My  moment of greatest joy was when I saw someone  commenting on my presentation that my words is the reason why they will keep on fighting for all non-speakers to be heard. That is all that I want to do. I want other non-speakers to have the same privilege I  have.

To be able to communicate,  is the most important thing in life. Without communication, I had no hope, no joy, no life.

Thank you to I-ASC, the sponsors and every one who made this event possible.

Non – speaking joy 

My silence 
  No speaking
  No communication
  No sharing opinions
  No requests
  No “ I love you”s
  No “please” and “ thank you” s
is not me 

My body, 
  Perfect and beautiful
  Unreliable
  Uncooperative
  Stupid
  Aggressive
is not me

My disruptive ways
  Pulling
  Pushing
  Noises
  Socially unacceptable behaviour
is not me

My words 
are who I am 
 
My words
  My heart
  My soul
  My life
  My love 
  
  My faithful companions
  My long hidden treasure
  My reason not to give up
My most greatest joy 
  
I love my words
I love sharing my words
I love bringing hope to others with my words
I love loving my family and friends with my words
  
I love studying 
  because of my words
I love saying what I feel
  because of my words
I love being noticed 
  because of my words
I love making my biggest dreams come true 
  because of my words 
 
My words 
are who I am
  
Listen to my words,
Do not look at 
  my silence, 
  my body or 
  my disruptive ways
  
MY WORDS ARE WHO I AM
  
MY WORDS 
ARE WHO I AM

This is the original version of the poem ” Non-speaking joy” written by Nicolaas Paulsen for and presented at SpellX 2020. 
















	


	





	

		
My stupid body comes second
	


	
			

				
			


		
	

		

ORIGINALY WRITTEN IN AFRIKAANS & TRANSLATED BY MOM. 





SCROLL DOWN FOR ENGLISH VERSION





My dom lyf kom tweede





Vandat ek my brein kan gebruik, by my Wiskunde-lesse, het ek baie meer beheer oor my lyf. My lyf was nog altyd my grootste, mooiste vyand. Hy het my jare lank verhoed om te kan leer, maar daai dae is nou verby. 





Al sukkel my lyf soms nog, my brein kry uiteindelik genoeg oefening sodat ek vrede kan maak met my lyf wat so neuk.





Die groot verskil het gekom toe ons met die Wiskunde klasse by Mnr. Schalk begin het. Dit het my lewe verander. Ek het nou ‘n kans wat niemand my nog voorheen gegee het nie. 





My brein is so gelukkig oor ek die kans kry om te kan goed leer wat my interesseer en wat moeilik genoeg is dat my brein oefening kry.





My lyf se simpelgeit is so onbelangrik in Mnr. Schalk se klasse, want ek en Mnr. Schalk verstaan mekaar mooi. Mnr. Schalk het nie voorheen met kinders soos ek gewerk nie, maar Mnr. Schalk het ‘n mooi hart en help my om mooi kalm te bly. 





Hy gee ook uitdagings vir my brein wat my baie goed laat voel.





Ek het by Mnr. Schalk geleer dat dit oraait is om soms iets verkeerd te kry. Hy hou nie op om vir my moeilike werk te laat doen net omdat my lyf dom is en ek nie my sakrekenaar se knoppies mooi kan druk nie. 





My brein is so opgewonde oor elke les dat ek nie kan wag vir my lesse om te begin nie.





Ek doen my lesse met my mamma se hulp op die rekenaar elke dag (via Zoom). Ek doen ook groepsklasse waarin daar ander gewone kinders ook is. Ek voel dan asof ek na ‘n gewone klas kyk op die rekenaar en dit laat my goed voel dat ek saam met gewone kinders kan skool gaan. My lewe is soveel beter vandat ek die Wiskunde lesse so doen.





My brein kry kans om te oefen en my lyf kom tweede, want al is my lyf soos hy is, kry ek steeds kans om my brein te gebruik en dit is baie lekker vir my.





Ek is bekommerd oor my vriende wat nog nie hulp gekry het nie en wie steeds blokkies moet sit en bou in ‘n babaklas iewers.  Ek hoop daar kom ‘n mnr Schalk oor hulle pad ook sodat hulle dieselfde kans kan kry as ek.      










My stupid body comes second










Since I can use my brain, at my Mathematics lessons, I have much more control over my body. My body has always been my biggest, most beautiful enemy. He has prevented me from learning for years, but those days are now over. 





Even though my body sometimes struggles, my brain finally gets enough exercise so that I can make peace with my body that does not do what I want it to do.





The big difference came when we started classes at Mr Schalk with Mathematics. It changed my life. I now have a chance no one has given me before. 





My brain is so happy to get the chance to learn things that interests me and  is difficult enough for my brain to get exercise.





My body’s silliness is so unimportant in Mr. Schalk’s classes, because Mr. Schalk and I understand each other beautifully. Mr. Schalk has not previously worked with children like me, but Mr. Schalk has a beautiful heart and he helps me stay pretty calm. 





He also gives my brain challenges  that makes me feel very good.





I learned from Mr. Schalk that it is okay to sometimes get something wrong. He doesn’t stop doing difficult work with me just because my body is stupid and I can’t push my calculator’s buttons perfectly. 





My brain is so excited about every lesson that I can’t wait for my lessons to start.





I do my lessons with my mommy’s help on the computer every day (via Zoom). I also do group classes in which there are other ordinary children as well. I then feel like I’m looking at an ordinary class on the computer and it makes me feel good that I can go to school with ordinary children. My life is so much better since I do the Mathematics lessons in this manner.





My brain gets a chance to practice and my body comes second, because, even if my body is like this, I still get a chance to use my brain and it’s very nice for me.





I’m worried about my friends who haven’t gotten help yet and who still have to sit and build blocks in a baby class somewhere. I hope there comes a Mr. Schalk across their way too so they can get the same chance as I am.

	


	





	

		
My tablet, my friend and my enemy.
	


	
			

				
			


		
	

		

My tablet, my vriend en my vyand





Originally written in Afrikaans by Nicolaas.  Scroll down for translated version in English.










These pictures upset me a lot because it shows how autistic children, like me,  and our parents frequently misunderstand each other. It’s not as simple as these pictures make it seem.





Hierdie prentjies ontstel my baie omdat dit wys hoe ons outistiese kinders en ons ouers mekaar dikwels misverstaan. Dit is nie so eenvoudig soos wat hierdie prentjies dit laat lyk nie.





Ek is so moedeloos.  As ek myself kom kry, dan is ek oppad na my tablet toe. My lyf vat my soontoe, of ek nou wil of nie.





My brein is geprogrammeer om na die tablet toe te gaan as ek nie iets anders het om myself mee besig te hou nie. Dit is ‘n vreeslike gesukkelry om my lyf op ‘n ander pad te kry. Ek wil so graag my lyf leer om ander goed ook te doen, maar voor ek my kom kry, dan het ek weer my tablet beet.





As ander mense by ons kom kuier, dan gryp ek hulle fone. Dit is so “embarrassing” dat ek myself so wangedra. Die mense skrik hulle dood as ek hulle fone gryp en ek sien hoe benoud hulle raak. Ek verstaan dit en ek wil regtig nie hulle fone vat nie. So, dit is beter as hulle hul fone in hulle sakke hou dat ek dit nie sien nie, want sodra ek dit sien, kry ek my lyf moeilik beheer en steek ek myself in die skande as ek hul fone gryp.





Ek wil ook vertel van die voordele van my tablet.





Ek leer graag ander tale aan deurdat ek na bekende stories kyk wat in verskillende tale vertaal is. Ek hou ook daarvan om die prentjies op verskillende maniere aanmekaar te las sodat ek dan my eie stories in my kop opmaak.





Dit is baie lekker vir my om met my tablet te speel, maar daar is ook ‘n baie slegte kant aan my tablet spelery.    





Dit is wanneer ek vashaak op ‘n spesifieke storie of plek op my tablet. Dit maak my net so mal soos vir die mense rondom my as ek dieselfde ding oor en oor en oor speel. Dit is vir my net so kwaai irriterend soos vir die ander wat saam kyk of dit aanhoor.  Dit is net my lyf wat daarop vas haak. Ek wil eintlik ander goed luister en kyk, maar my lyf raak vas gevang in dieselfde pad wat dan oor en oor loop en dit is vir my baie sleg as dit gebeur.





Daar is goed waarvan ek baie hou, soos in Lion King wanneer die papa leeu die baba leeu vir die ander diere wys, maar ek is te bang om daarna te kyk, want dan weet ek verseker dat my lyf gaan vashaak. Dit is soos ‘n maalkolk wat my lyf insuig, en dan kan ek om die dood nie ontsnap daarvan af nie. Dit is my grootste struikelblok as dit gebeur. My ouers dink ek is vreeslik lief vir Lion King en sit dit graag vir my op, maar eintlik maak hulle my mooi bang wanneer hulle dit doen. Dit is dan my ergste as hulle dink hulle doen goed, maar eintlik wil ek net sê “help my om iets anders te kyk.” Daar is ander stories wat dieselfde doen as Lion King, maar vir my is Lion King die ergste maalkolk. As iemand my laat kies wat ek wil kyk, sal my lyf altyd Lion King kies, al maak dit my bang.





Dit is die neukery van my dom lyf. Hy maak nie soos ek wil hê hy moet maak nie. Dit is waarom my tablet my vriend en my vyand is.





Toe ek nog nie so mooi kon spel of skryf nie, het ek soms probeer kommunikeer deur die iPad te gebruik om boodskappe te probeer uit kry. Ek het byvoorbeeld sekere dele van my stories oor en oor gespeel om my mamma se aandag te probeer trek en ‘n boodskap vir haar te stuur, maar sy het dit eers begin verstaan dat ek vir haar ‘n boodskap probeer stuur op dié manier toe sy besef het ek is slimmer as wat almal gedink het, toe ons met Spelling to Communicate begin het.





Ek verstaan hoekom ouers moedeloos raak van dieselfde stories oor en oor kyk, want dit is vir my net so vervelig soos vir hulle. Ek vra asb baie mooi dat ouers hul kinders asseblief moet help om uit daai maalkolk uit te kom van daai selfde storie oor en oor tot vervelens toe.





Dit was my gunsteling tydverdryf toe ek klein was om stories soos Barney en die Loflaaities te kyk, want dit het ander kinders in gehad en ek was so alleen in my tronk sonder kommunikasie, dat die kinders in die Barney stories my enigste geselskap was. Dit is hoekom ek dit so graag gekyk het.





Die storie van Nemo was vir my mooi omdat dit die vissie met ‘n te klein vin in gehad het en hy het ‘n kwaai avontuur gehad.





Ek hou ook van stories wat lyk asof die karakters met my praat, want dan verbeel ek my ek praat terug met hulle soos ‘n kind met ‘n stem. Daar was baie jare wat niemand geweet het dat ek slim is en ook dink oor dinge nie. Dit is hoekom niemand met my gepraat het asof ek verstaan en kan terugpraat nie.





Ek is nou groot en ek wil nou ander stories kyk, wat groter kinders in belangstel, maar nou haak my lyf vas op daai kinderstories wat ek jare terug begin kyk het.





Dit is swaar om te praat oor die verlede, maar dit is nodig sodat ander kinders wie nie so bevoorreg is soos ek nie, ook gehelp kan word.





Ek raak soms so angstig as ek nie die tablet in die hande kry nie, dat ek dit heeltemal verloor.





Dit is ‘n moeilike balans, want soms help my tablet my om te kalmeer. Die bekendheid van die ou storie en die feit dat ek weet wat gaan gebeur, is vir my gerusstellend omdat ek dit kan manupileer soos wat ek wil. As ek daarna soek om te kalmeer en ek kry dit nie, dan raak ek vreeslik angstig. Dit is ‘n manier om myself te kalmeer, maar terselfder tyd is dit ook my grootste vyand. As my lyf vashaak op dieselfde plek, dan kalmeer dit my nie, maar maak my weer angstig,





My enigste raad vir ouers is om met hul kinders ‘n goeie verhouding te hê, sodat hul kan sien wanneer die tablet vir hul kind ontstel en wanneer dit hul kalmeer. Die probleem is dat dieselfde ding kan my kalmeer en ontstel. Dit is moeilik om te sien wat is die regte een, wat wanneer geld en wanneer om die tablet af te vat en wanneer om dit te gee.





As ek voorbereid is daarop dat die krag gaan afgaan, of dat daar nie sein gaan wees nie, kan ek dit hanteer. Maar as dit onverwags gebeur, ontstel dit my.





Ek maak myself  kalm deurdat ek na iets soek wat ek kan gebruik in die tablet se plek om my brein mee besig te hou.  Dit is wat die tablet eintlik vir my doen. Dit is ‘n manier om my brein mee besig te hou. As ek iets anders het om my lyf en my brein mee besig te hou, het ek nie die tablet nodig nie. Dis is hoekom my lyf na my tablet toe gaan as ek nie iets anders het om my brein mee besig te hou nie. Ek weet nie hoe verslawing is nie, maar my lyf het die tablet nodig om te kalmeer, maar as ek vas haak op iets, laat dit my verloor waarvoor ek dit aanvanklik gebruik het, om te kalmeer .





  





I get so discouraged. Before I can prevent myself from doing it, I’m going to my tablet. My body takes me there, whether I like it or not. My brain is programmed to go to the tablet if I don’t have anything else to keep myself busy with. It’s a terrible struggle to get my body on another road. I really want to teach my body to do other things as well, but before I know, I have my tablet in my hands again.





If other people come to visit us, I grab their phones. It is so embarrassing when I misbehave like that. The people get such a fright when I grab their phones and I see how distressed they become. I understand that. I really don’t want to take their phones. It is better if they keep their phones in their pockets,  that I don’t see it because as soon as I see it, I struggle to keep my body away from it and I embarrass myself when I grab their phones.





I like to learn other languages by looking at known stories that were translated into different languages. I also like to put the pictures together in different ways so that I then make my own stories in my head.





I also want to tell of the benefits of my tablet.





It is very nice for me to play with my tablet, but there is also a very bad side to playing with my tablet.





That’s when I get stuck on a specific story or place on my tablet. It makes me just as crazy as for the people around me when I play the same thing over and over and over again. It is just as extremely irritating to me as for the others who are watching or hearing it. It’s just my body getting stuck. I actually want to listen and watch other stuff, but my body gets stuck in the same path, repeating itself over and over.  It is very bad when it happens. 





There is stuff that I like very much, as in Lion King when the daddy Lion shows the baby lion to the other animals, but I’m too afraid to look at it. I know for sure that my body is going to get stuck. It is like my body get sucked in by a whirlpool, and then I cannot escape for the life of me. This is my biggest obstacle if this happens. My parents think I am terribly fond of Lion King and they like to put it on for me, but actually they make me pretty scared when they do. It’s my worst if they think they’re doing well, but actually I just want to shout “help me to do something else”.  There are other stories that do the same as Lion King, but for me, Lion King is the worst whirlpool. If someone is letting me choose what I want to watch, my body will always choose Lion King, though it scares me. This is the horror of my stupid body. It does not do what I want it to do. That is why my tablet is my friend and my enemy.





Before I could spell or write, I sometimes tried to communicate by using the IPad to try to get messages out. For example, I played some parts of my stories over and over to try to get my mama’s attention and send a message to her, but she only started understanding that I was trying to send her a message in this way after she realized I was smarter than everyone thought, when we started with Spelling to Communicate. 





I understand why parents get discouraged from watching the same stories over and over, because it is just as boring to me as to them. I ask very nicely that parents should help their children get out of that whirlpool of that same story over and over.





It was my favorite pastime to watch stories like Barney and the Loflaaities, as it had other children in. I was so alone in my jail without communication, that the children in the Barney stories were my only company. That’s why I’d like to watch it. The story of Nemo was beautiful for me because it had the fish with a too small vin and he had an great adventure. I also like stories that look like the characters are talking to me, because then I imagine me talking back to them like a child with a voice. There were many years when no one knew I was clever and can think about things. That’s why nobody spoke to me as if I understood and could speak back. I am now grown up and I want to watch other stories now that older children are interested in, but now my body gets stuck on those kids stories I started watching years ago. 





It is hard to talk about the past, but it is necessary so that other children who are not as privileged as I am, can also be helped.





I sometimes get so anxious when I don’t get the tablet, I lose it completely.  This is a tough balance, because sometimes my tablet helps me to calm down. The familiarity of the old story and the fact that I know what is going to happen is reassuring and I can also manipulate it as I wish. When I want to use it to calm down, and I don’t get it, I get terribly anxious. It is a way to calm myself, but also sometimes my worst enemy. If my body gets stuck at the same place, it won’t calm me, but makes me fret again.





My only advice for parents is to have a good relationship with their children, so they can see when the tablet is upsetting their child and when it’s calming them. The problem is that the same thing can calm and upset me. It’s hard to see what is the right one, when to take the tablet away and when to give it.





When I know beforehand that the electricity is going to be down, or that there is not going to be signal, I’ll be able to handle it. But if this happens unexpectedly, I get very anxious. I prepare myself by looking for something I can use in the tablet’s place to keep my brain busy.





That’s what the tablet actually does for me. It is a way to keep my brain busy. If I have something else to keep my body and my brain occupied with, I don’t need the tablet. That’s why my body goes to my tablet if I don’t have anything else to keep my brain busy with. I don’t know how addiction is, but my body needs the tablet to calm down. But if I get stuck on something, it loses its ability to calm me down.