MY WOORDE IS MOOI

My mamma is besig om reg te maak om vir mense te vertel van S2C (Spelling to Communicate) oor ons dit ook gebruik om my woorde op papier te kry om dit vir die wereld te sê.

“Jou woorde is so mooi dat ek nie weet watter om te vat en watter om te los nie” is die mooiste woorde wat ek nog ooit gehoor het. Dit is wat my mamma vir my gesê het terwyl sy deur my blog gekyk het.

My woorde is my grootste skat, want oor ons nie kan praat nie is woorde ons grootste geheim. My woorde was nog altyd in my kop, maar dit was oor ons S2C begin gebruik het, dat almal nou weet van my woorde wat nie by my mond kan uitkom nie.

My woorde is so mooi omdat hulle so belangrik is vir my. My woorde is ook my skat, want hulle is baie kosbaar vir my.

My mamma is my woorde se stem, maar hulle is MY woorde.

My stem is stil, maar my woorde is hoorbaar omdat my mamma hulle kan lees. Al is dit nou nie die maklikste manier van praat nie, is dit die heel beste manier vir my om dit op papier te kry en vir die wereld te wys.

Dit is belangrik om vir die wereld te wys dat  ons woorde het, al het ons nie stemme nie, want my woorde het my wereld vir my verander.

Voor my woorde kon uitkom, het mense gedink ons is nie in staat om te dink of te verstaan of te leer nie.  Om soos ‘n mens behandel te word, moet mense weet dat jy mooi kan dink en verstaan, anders sien hulle jou nie raak nie, praat nie met jou nie, vra nie vir jou wat jy dink nie, gee jou nie kans om te leer nie, praat van jou asof jy nie daar is of verstaan nie, skinder voor jou, want hulle weet jy kan nie vertel wat jy gehoor het nie, beplan om goed te doen waarby jy nie ingesluit word nie in jou geselskap, bespreek jou swak punte asof jy nie verstaan wat hulle bedoel nie.

Dit is omdat my woorde nou gehoor en gelees kan word, dat mense my nou soos ‘n mens behandel.

My oormaak van my lewe het begin toe my woorde begin uitkom het. Dit was die begin van my lewe toe my woorde nie meer net my geheim was nie. Dit wat my lewe was voor my woorde kon uitkom, kan ons nie ‘n lewe noem nie. Dit was so sleg dat my woorde nie genoeg is om daarvan te vertel nie. Ek moet daaroor praat, want daar is nog baie ander kinders en groot mense wat daardie slegte lewe ook moet oorleef. Om my mamma te hoor vertel van daardie donker tyd in ons lewe is so sleg dat ons dit nie wil doen nie, maar daar is nog baie mense wat dit ook moet hoor   want my woorde het hulle nog nie oortuig nie of my woorde het hulle nog nie bereik nie.

Om oor daardie donker tyd te praat, is vir my bitter moeilik. My lyf raak uit beheer as my hart seer raak, of as ek aan mooi goed dink. So, as ons aan  daardie tyd dink, kan ek glad nie my lyf onder beheer hou nie. Dit is vir my baie moeilik om hierdie blog te skryf, want sedert ons oor die verlede begin praat het, was my lyf al uit beheer.

Voor my woorde kon uitkom, was my lyf byna nooit rustig nie, want my mamma kon my nie help om die hartseer goed te verwerk nie, want ons kon nie gesels daaroor nie. My mamma raak nou ook hartseer want sy weet hoe graag sy my wou help, maar sonder kommunikasie was dit alles ‘n mislukking. My lyf is nou baie beter, want ons kan gesels oor die goed wat ons pla. Sonder woorde wat kan uitkom, is dit onmoontlik om my probleme  uit te sorteer deur daaroor te praat. Dit is nou al wanneer ons oor daardie donker tyd in ons lewens praat, wannneer ons dit gebruik om te praat oor goed wat ons pla en wat ons nie voorheen kon uitsorteer nie omdat ons mekaar nie kon verstaan nie.

My mamma is hartseer oor die baie tyd wat ons verloor het toe ek nie kon kommunikeer nie, maar dit is nou verby. Oor ons dit nie weer kan terug kry nie, gebruik ons nou elke kans wat ons kry om te gesels. Baie ander mense  wat kan praat, gesels nie so baie soos ons nie.

Om te sê dat my lewe nou beter geraak het sedert ek kan kommunikeer, is nie reg nie. Ek lewe eers vandat ek kan kommunikeer.

My hart voel nou goed omdat ons hierdie blog kon klaar skryf. Nou is my lewe nog beter want nou kan ons aan ander mense ook vertel wat hulle moet doen om ook ‘n lewe te kan hê met kommunikasie.        

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.
.
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.

	


	



	
		

	



	


	
	









	

		

	

	
	


	
	
						
		
		




	
		
	

		

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