What I would have told my parents before I could communicate # Wat ek vir my ouers sou sê toe ek nog nie kon praat nie

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My hart raak seer as  ek hieroor praat, want my ouers het baie tyd en geld gemors. My blogpost gaan nie oor wie se skuld dit was nie, maar vir ander om gehelp te word uit die foute wat in my lewe gemaak is.

 “Outisme is nie die einde van die wêreld nie,  ek gaan okay wees. “

As ek kon praat, sou ek dit eerste vir hulle wou sê. My hart moet baie keer hoor hoe ander mense vertel dat outisme ‘n baie slegte ding is, maar outisme is my lewe en dit is okay om outisties te wees. Dit is net baie sleg as mamma my nie verstaan nie. Omdat sy nie van beter geweet het nie en sy na slim mense geluister het en hulle was eintlik baie dommer as sy sy het dit net nie geweet nie. Sy is baie kere vertel dat my gedrag sleg was en eintlik was dit my lyf wat nie na my kop wil luister nie. Mamma het baie keer gefrustreerd geraak met my want sy het gedink ek wil nie maak soos sy sê nie, maar eintlik was ek kliphard besig om te probeer, my lyf wou net nie na my kop luister nie.   Ek is nou baie bly dat mamma van beter weet maar nou sukkel sy steeds om ander mense te oortuig dat dit so is. Mamma is baie mooi slim, maar met outisme was sy mooi dom, want sy het nie verstaan dat sy my nie kon regkry met allerhande terapieë nie, want ek is eintlik klaar reg en mooi, net soos ek is. Outisme en al.

Mamma was onkundig en het baie moeite gedoen om van outisme te leer, maar sy het na mense geluister wat nie self outisties was nie. Hulle is nie altyd reg oor wat hulle dink outisme is nie. As sy woorde kon hoor van ander outistiese kinders soos ek, dan sou sy van beter geweet het. Daarom is dit belangrik dat ek my storie vertel sodat ander my woorde kan hoor en beter verstaan. Wat ek vir haar sou sê is dat:

 “Ek is ‘n mens net soos almal anders, maar my lyf is net nie dieselfde as ander mense s’n nie, want hy wil nie vir my kop luister nie. “

My hart voel nou sommer stukke beter noudat ek dit gesê het.

Wat se raad het ek vir mense in dieselfde posisie? Dit is nou baie moeilik, want mamma is my grootste ondersteuner en ek moet nou vertel van mamma se mooi maniere wat nie gewerk het nie. Dit is vir my baie sleg, maar ek weet mamma wil net so graag ander mense help soos ek, so ek weet mamma sal dit verstaan. Ek is mos mamma se slim kind.

My mamma het my na **** geneem en hulle het my nie verstaan nie, maar toe ons by die S2C workshop was verlede jaar, het mamma vir hulle ook saam genooi. Mamma het goeie werk gedoen om hulle saam te nooi. Dit was mamma se beste manier om my ‘n  kans te gee   om vir hulle te wys dat hulle my onderskat het. Dit is wat ek wil sê vir ander ouers:

 “Moenie jou kind onderskat nie, want sy of haar lyf laat hom of haar dalk  dom lyk, maar mooi woorde moet net ‘n manier kry om uit te kom, want glo my, hulle het baie mooi woorde.”

Hoe dankbaar ek is omdat ek nou kan kommunikeer, want dit is die enigste manier waarop ek kan wys hoe ek voel. My lyf is nie my sterk punt nie. Ek is dankbaar dat ek kan hoor en sien en kan loop en spring, maar my lyf is tog ook my hart en my brein se huis, so ek is dankbaar dat hy daar is, maar sonder kommunikasie is my lyf ‘n reuse struikelblok. As ek dus met my ouers kon praat, sou ek sê dat:

 “julle my net moet help met  kommunikasie. Die res help nie veel nie as niemand my verstaan nie.”

So, as ek raad moet gee, is ek in iemand se slegte boekie, want ek dink die enigste terapie wat my gehelp het was Spelling to Communicate. Die ander goed is nie so effektief nie, want hulle fokus net op my dom lyf.

Translation to English by mom.

I get very sad, when I speak  about this, because my parents wasted much time and money. This blogpost is not about whose fault it is, but to help others from the mistakes made in my life.

“ Autism is not the end of the world, I am going to be okay”

If I could speak, that is the first thing I would have liked to tell them.I often have to listen to people saying that autism is a very terrible thing, but autism is my life, and it is okay to be autistic. The only bad thing is when my mom does not understand me. Because she did not know any better, she listened to clever people who were actually non the wiser, she just did not know it. She were often told that my behaviour was bad, but in actual fact it was my body which did not listen to my brain. My mom often got frustrated with me, because she thought that I did not want to do what she wanted me to do, meanwhile I was trying my utmost best, my body just did not want to listen to my brain. I am very glad that my mom now knows better, but now she struggles to convince others. My mom is very clever, but with autism she was very stupid. She did not understand that she could not fix me with all sorts of therapies, because I was already right and beautiful just the way I am, autism and all.

My mom was uninformed about autism and made a lot of effort to learn about autism, but she listened to people who were not autistic themselves. They are not always right about what they think autism is.  If she could hear the words off other autistic children like me, she would have been better off. That is why it is important to tell my story so that other people can hear my words and understand better. What I would have told her if I could, was:

“I am a human just like everyone else, my body is just not the same as others, because it does not listen to my  brain.”

What advice do I have for people in the same position? This is very difficult for me, because my mom is my biggest supporter and I have to tell of things she did which did not work. This is terrible for me to do, but I know my mom wants to help other people just as much as I do, so I know that she will understand. I am my mom’s clever child.

My mom took me to ****, but they did not understand me. When we went to the S2C workshop the previous year, my mom invited them to go as well. My mom did good by inviting them. That was the best way I got an opportunity to show them that they underestimated me. That is what I want to tell other parents:

“Do not underestimate your child, because it is his or her body which makes him or her look stupid, but beautiful words just need a way to get out, because believe me, they have very beautiful words.”

How thankful am I that I can now communicate, because it is the only way that I can show what I feel. My body is not my best feature. I am grateful that I can hear and see and walk and jump, but my body is also my heart and my brain’s house. So, I am grateful that I have it, but without communication, my body is a huge barrier. If I could speak to my parents then, I would have told them:

“Only help me to communicate. The rest does not help much if nobody understands me.”

So, if I have to give others advice, I am stepping on toes. In my opinion, the only therapy which helped me, was Spelling to Communicate. The rest of the therapies was not as effective because it only focused on my stupid body.