Latest Entries »

Shaina

My name is Shaina Cilimberg and I am almost 27 years old. I was diagnosed with Asperger’s in the Dark Age, the 2000s. Back then, there was limited knowledge on Asperger’s Disorder. It was a time when mental illness was seen as demon possession or an excuse for sin. While Satan does attack everyone’s (neurotypical or not) minds, mental illness is not demon possession. Demon possession has more to do with the individual, not with mental disorders. Mental disorders are not made up excuses for sin, but real chemical imbalance in the brain. Add that to the fact our frontal lobes are not completely developed until our mid to late twenties.

It took me a while to actually accept that I have Asperger’s. Then, I found out more and how the traits related to me. See, some people (including professionals) will say you do not have it, while other say you do. I think people need to educate themselves on what Asperger’s/Autism is and realize we are not the some. While some of us are introverts, others are extreme extroverts. I’m an extrovert.  When I get an outfit I like or haven’t worn the outfit I like in a while, I want to be seen in it. I really enjoyed reading the Diary of Anne Frank because I saw myself in her. She was fun and bubbly. She was different from those around her because of her personality. She wasn’t boring.

Today, I read something on a blog about how my fellow Aspie girls and I have a tendency to root for the underdog. I guess that’s why I like Jack Frost from Rise of the Guardians so much. He is misunderstood and faces constant rejection and I have experienced that a lot in the pasr. I really like “Let it Go” from Frozen. I struggle with OCD, Asperger’s and vertigo and it just is a good way to tell people not to worry so much.

As a Christian, I need to trust Jesus, but it is so hard. All the stresses of life, worries and fears get in the way. I see others have seemingly better lives and feel depressed because mine isn’t perfect. Yet, I want to help others.

I am a struggling author who wants people to take her books seriously and learn from them. I want to be believed when I’m telling the truth and want to be believed in. Jack Frost wanted to be believed in as well. I just relate so much to him. Maybe I’ll find my center and why I was chosen to be like this.

My books are for teens and young adults, called Deep River High Series. They tackle serious issues such as friendships, bullying, eating disorders in males, OCD, Aspergers and other topics. They are really good stories I think teens and young adults would benefit from.

I do have to warn you; I’m like most females who have a thing for angsty male characters. Selena in To Be Sane is an angsty female, though and Lydia could be considered that in Perfect Forgiveness. I am currently working on a Christian Fantasy novel, which will take a while. I want to really make sure it’s well-written.

The best way to overcome insecurities where you are in life is to not compare yourself to others. We should have Christ-like role models to imitate as they imitate Christ. However, we should not mope because someone’s life seems so much better than ours. I may not be popular or “normal”. I may be boring to some and outlandish to others. I’m me. As long as I try to improve myself as a human being, that’s all that matters. I don’t need to sell my soul to the Devil to be happy and I refuse to. I burst into songs from Frozen and am obsessed with Rise of the Guardians. As long as I don’t put those two over Jesus, I’m fine.

I am so grateful for Rise of the Guardians because it is a great example of how to write a story and character well. I want people to feel towards my book characters the way I feel towards Jack Frost. I want them to feel for and relate to my characters. I want to write my characters showing emotions in different ways than just the same old same old. Rise of the Guardians does so well with that.

One of my struggles with OCD and Asperger’s is the intrusive thoughts. They really bother me and won’t go away. I can’t concentrate on conversations because of them. I get all these thoughts of second-guessing myself, my friends and things I like/don’t like. Some of these thoughts are blasphemous towards God and they just won’t go away.  If you believe in prayer, please pray for me. Even if you don’t, think about us who suffer. We are people with goals and dreams. We do not want to be overlooked by the system any longer.

People who say those with Asperger’s lack empathy, but they could not be anymore wrong. I care a lot for others. I have tons of empathy which can lead to be taken advantage of, as another trait of Asperger’s says. I was reading the Maze Runner and had too much empathy for the characters to continue. Even the Hunger Games characters had more hope than they did. I actually am a fan of Hunger Games.  In fact, over-empathetic can be a trait of Asperger’s.

I am very protective of people’s freedoms. If feel horrible if someone is forced to have their hair cut too short, wear something not appropriate to weather or our culture. One time, I tried to get a church school to allow the boys to have hair to their ears and I was the “bad guy”. I was just trying to let people see a guy does not need hair above his ears in order to be short and that ear length is very normal for guys.

As a Christian with Asperger’s, it is hard to fit in anywhere. I always worry about offending or upsetting people. I have to deal with people not believing me when I am telling the truth and worry about losing friendships. I worry about whether or not I’m in the right friendship. I worry about Hell because of blasphemous thoughts or because I love Fantasy or because I prefer guys to have longer hair than some think they should. Everytime something seems to be going right it isn’t and good times are sure to end more than the bad times it seems.

People with Asperger’s lack an awareness of social cues and have poor social skills. The extroverts like me are always bound to say the wrong thing, no matter one. It’s like we either do not comprehend what is said to us or others don’t comprehend us. I could make all the guesses about the introverts but I don’t know. Some really can’t talk and have trouble with speech. If I were an introvert, it would be a “why bother trying” thing for me. Since I’m not, I just talk and regret everything while or after and it consumes my mind.

People see us with Asperger’s as either unintelligent or extremely talented. I’m neither. Don’t assume I can’t swim, can’t read or be amazed I wrote a good story. If I’m telling you a prayer request, don’t pass it off as deep. If I show interest in friendship, give me a chance. Talk to me and communicate with me. Give me a chance in employment.

[To read some other stories of people living with different disabilities, click here]

“And then God opened a door for me and I met “The One” and I was truly blessed and…

…everyone lives happily ever after? 

Do you ever get the urge to slap christians for speaking like this? i most definitely do!

Sometimes i just want to slap christians on the head. And sometimes i realise the well-meaning christian needing a slap might just be me.

Cos i might not use those particular words but i’m pretty sure there is other jargonese [like the word 'christianese' - urgh - SLAP!] that i slip into that makes other friends of mine want to slap me on the head.

And probably not just other christians either…

Hermann, who sometimes writes racist-sounding-comments on my blog, thinks i use the term ‘blown away’ too much:

You tend to use the phrase, “blown away” a lot. Every time I read it, I think of you being blown away like a feather – it implies that you are not very grounded. It sounds very cliched – used a lot by Christians. It may also have other meanings – lets not go there..

He wasn’t too fond of my use of the word ‘intentional’ either:

You use the word “intentional” a lot. Everything everyone does is intentional. By saying this, you imply that the rest of us act as zombies with no free will. If for example I spend R200 on a bottle of whiskey, it is my intention. If I give it to the poor, it is my intention. Everything we all do is always intentional so no need to mention it.

Hermann is quite direct when it comes to suggesting the way forward for me in this regard:

Please get those words out of your blog.

Well, at least he did say “please”. [Although do you think it was intentional?]

OPEN DOORS? OR CLOSED DOORS AND OPEN WINDOWS? 

door

i think this may be one of the ones that gets to me. listening christian types talking about God opening a door for them when it comes to being accepted into college or getting funds for a short-term missions trip or starting a relationship with someone.

i don’t think i’ve ever heard someone tell a story about going to the shops… “And then God opened a door for me as I saw a hungry person sitting outside of the store and knew that God was telling me to ask them what they wanted for lunch and I went in and bought them a meal with my own money.”

i HAVE heard quite a number of people tell me stories about buying people they meet in the street lunch, but i can’t recall any of those ever being a ‘God opened a door for me’ story.

Maybe that’s just cos all of those stories are simple obedience stories – doing what God already opened many doors for us to do when He shared His will with us [much of which i cover in this post on The Will of God]

SO WHAT DOES IT MEAN FOR GOD TO OPEN A DOOR FOR US THEN?

Well, i’m not sure that He does.

i tend to find more stories in the Bible of God closing doors.

i think of Balaam and the donkey [Numbers 22]

i am reminded of David wanting to build the temple for God [2 Samuel 7]

James and John’s mom trying to strike a deal with Jesus for them to be able to sit at His left and right hand side when He is king [Matthew 20]

and i’m sure there are more and i’m sure other people could name a bunch of stories that they think are clear illustrations that God DOES in fact open doors and how could i be so stupid as to think otherwise. But i am less concerned with that right now.

The story i really DO like on this topic though [yes, Hermann who scribes racist thoughts, it blows my mind!] is this one, which can be found intentionally in Acts 16:

Paul and his companions traveled throughout the region of Phrygia and Galatia, having been kept by the Holy Spirit from preaching the word in the province of Asia. When they came to the border of Mysia, they tried to enter Bithynia, but the Spirit of Jesus would not allow them to. So they passed by Mysia and went down to Troas. During the night Paul had a vision of a man of Macedonia standing and begging him, “Come over to Macedonia and help us.” 10 After Paul had seen the vision, we got ready at once to leave for Macedonia, concluding that God had called us to preach the gospel to them. 

What is interesting is that there is no real commentary on the story and so we have to kinda fill in the blanks a little. But what it LOOKS like is that Paul and his companions tried to do a bunch of stuff.

They tried to preach the word in the province of Asia – but the Holy Spirit stopped them somehow [gut feel? word of prophecy? hint or a nudge?]

They tried to enter Bithynia, but the Spirit of Jesus would not allow them to.

What i absolutely LOVE about this story is that the whole Trinity seems to get involved to make sure it happens right.

We don’t know why God stopped them, but they try a bunch of stuff and He does.

And then maybe the most hysterical part of the whole story is the fact that the “Yes” comes while Paul is sleeping. [so i guess this whole story could be interpreted the complete opposite way as in Paul was doing a bunch of stuff and God needed to slow him down and then stop him completely before He was able to tell Paul what He wanted him to do].

But i like the idea of Paul trying something – door closes. Paul tries something else – another door closes. Paul keeps on trying stuff [and it's important to note the "stuff" he is trying is "kingdom stuff" - he's not just farting into a sock here] and the doors keep on closing. Finally God speaks to Paul clearly and Paul obeys.

Does God open doors? Kind of, i think, but not so much in the way we like to talk about it:

i want a child, but we can’t fall pregnant – could an open door be the thousands of parentless babies desperate for a family who will take them in and call them their own?

i want a girlfriend, but the girl i like doesn’t like me back – could an open door be finding contentment in singleness for the moment and taking advantage of everything that goes with that?

i want to know God’s will for my life – might an open door be the homeless shelter just three blocks away from your house that is looking for volunteers, the local prison ministry looking for people who will write letters to inmates and simply be their friends, the old peoples’ home that is desperate for young [and older] people who will come and have conversations or play games or read stories to their people?

So many open doors, so little time…

And surely, the God we serve is big enough to close a door if we are earnestly heading for a wrong one?[even if He has to pull in the other members of the Trinity to do so!]

Let’s stop waiting for open doors and start living obediently.

i remember a prayer Keith Green’s wife Melody challenged her audience to pray after one particular talk:

[1] God, i will go anywhere You want me to go

[2] God, i will do anything You want me to do

If you want to see doors open quickly, that is a dangerous and liberating prayer to pray as you start each new day. Especially if you mean it.

What are your thoughts on the whole ‘Open Door’ vibe? 

race

So this past week all the bloggers of colour have been writing to all the other bloggers of other colour but since they do not know each other personally [maybe the main problem?] they are simply sticking them on their blog for mostly people of their own colour to read and cheer and like and comment on… although every now and then a person of the other colour stumbles upon it and makes themselves known…

ALL THE WHITE PEOPLES

It started with this piece by Ntsiki Mazwai titled Dear White South Africans where the word ‘dear’ was clearly chosen only for its letter-beginning properties. If you have not read it yet then please go and do so before continuing [and if you want perhaps greater insight, take some time reading the comments and be very sure that this is not only one person's opinion]. The gist of it is a response to all the white South Africans changing the idea of Heritage Day to Braai Day and begins with this very all-inclusive broad-swept statement:

Owing to this concept of Braai Day, I am forced to have this honest and somewhat uncomfortable conversation with you. I had hoped that since you have grown white people, they would teach you better…but they have not.

If the opening sentence is not directive enough of where this piece might go, the next paragraph throws off the gloves completely and no holds are barred as we are reminded that as white people we are descendants of such fun folks as Hitler and friends:

Let’s start at the beginning……my dear white people, you are not descendants of this land called Afrika. Afrika has its own children that it has birthed and nurtures.

It is written in the history books (which your people wrote) that you came from Holland, France, Britain, Spain…..all these are European countries.

The moral of the story is….You are descendants of Europe.

You are the children of Elizabeth, Hitler, Bismarck and others that built their legacy on stealing lands and making people slaves.

And so on, with lots of mention of ‘You white people’ [as in all of us, of course] and the fact that it was only black people who were responsible for the end of apartheid [really interesting when you take a look at her 'Dear ANC Open Letter' where she makes it clear that 'There were many political parties who liberated us…a fact you like to blatantly ignore.' in fact, i really enjoyed that post of hers much more than this one so give it a read]

While there may be a lot of truth in some of the things Ntsiki writes, she loses a lot of integrity by her continual blatant use of sweeping generalisation:

When you white people speak to a group of black people why do you speak ‘stupid’ English? That thing where you talk down to black workers makes you look stupid.

So absolutely, when that happens it is an abomination of racism and should be stopped. But it is not all white people and if she had given her piece a more balanced tone, i think it would have carried greater weight.

Possibly the strongest part of her piece for me was when she signed off with the words, Your rainbow nations counterparts, especially when i googled the word for full definition and saw adjectives like ‘equivalent’, ‘complement, ‘coequal’ and ‘fellow brother or sister’ as the descriptors.

There is definitely value in reading what she says and understanding this is how she feels and in going through the comments and knowing she is not alone in voicing it. We need to be aware of these voices and not just toss them aside because we disagree with everything they are saying or how it might come across.

A RESPONSE 

Next up i read this blog by someone who calls himself Paul ‘or Juby or Jubez or Jubalizer or Jabualani or whatever you prefer.’ [i suspect that the 'whatever you prefer' bit is why he keeps having so many names!] titled ‘A response to “Dear White South Africans”‘ which surprisingly ended up being a response to the above blog post [who would've thought with such a deceptive title?]. Again, if you have not read this piece, do yourself a favour and go read the whole thing – this is just a summary of some parts that stood out to me:

Paul addresses Ntsiki directly by starting off with a description or explanation of who he is:

I have read your post and given it much consideration. I should perhaps start by saying that I am a white male who was born and raised in Durban. My heritage is non-Afrikaans, but I am not sure that that makes me ‘English’. I am however English speaking. There are a few issues raised that I would like to share my view on.

It is true that that I am of European descent. My ancestors (mostly in 1820) arrived in South Africa and committed atrocities against black people; enslavement, Apartheid, etc. I was born in the early 1990’s into a privileged life. I will never be able to understand fully what the people of this country went through, the oppression and the humiliation. You will always have my sympathies for what happened.

And then goes on to address specific points she has made. What i liked about Paul’s piece is that it felt quite gracious and humilitous [it's a word!] in its response where it could quite easily have come across as knee-jerk responsive as Ntsiki’s did to me. And he describes his identity in a way which i really strongly identify with myself:

I would like to talk about identity. I believe that I am African. I might not be black by my family has lived here for 200 years. I have been to Europe and certainly do not consider myself European. African identity is not a matter of race, it’s a matter of culture.  I am a South African because my culture exists nowhere else. It is what makes me who I am. It is my home.

A clever look back into the past extending the argument of why white South Africans should be referred to as ‘European’ into one looking at where the Zulu and Xhosa tribes moved in from, leads him to this witty and apt conclusion: Calling me one of the children of Hitler is like calling you a child of Charles Taylor, this is simply wrong. I could go on endlessly with such arguments. Ultimately, we are South African as our culture exists nowhere else.

Paul gives an understanding of how he sees Heritage day from the point of view of being more inclusive for each person to be able to celebrate their heritage. He also invites the idea of Heritage day being a day of sharing cultures and celebrating the differences in each other.

And Paul’s ending is also a really strong one: My fellow South African

Maybe we should just be focusing on the last lines of these posts and work from there…

ALL THE BLACK PEOPLES

Over on ‘To Muse and Abuse’, Matthew de Klerk responded with his piece titled, ‘Dear Black Bloggers [A Response to Dear White South Africans]‘ which i would also highly recommend that you read.

i have to assume the title is a typo as his post seems to be a direct response to Ntsiki and i don’t think he is doing the same thing of generalising that all black bloggers need to hear this stuff, but maybe he opened it up as a response to the many people that were commenting on her blog in agreement as well?

While similiar in content to Paul’s piece, Matthew’s piece does tend to head to more emotional extremes as can be evidenced in his opening:

Emotion can be a dangerous thing. Sure, anger can lend to our words and actions a passionate intensity that enables a vociferous, unbidden expression of what we’re feeling at the time, but it also brings with it a dangerous cloud of obscurity to our thoughts, a choking fog that surmounts clarity and seeps in at the cracks of our rhetoric and renders it illogical, irrational.

Which is why when I read a Facebook-furore piece yesterday entitled “Dear White South Africans” , I was unsurprised to see what can only be described as dangerous, illogical generalisations at play in the form of that ever-emotional issue, race.

There are differences though, as Matthew agrees with Ntsiki that the concept of ‘Braai Day’ which he refers to as ‘a capitalist, consumerist and shallow hijacking of a public holiday’ is not something he is a fan of and has actually written other posts against.

i found this post quite interesting as there is the misdirection of this teaser:

Now then, to the issue at hand: it would be easy to call Mazwai’s blog post a baseless, moronic, stereotyping, hate-mongering mess of oversimplified sweeping generalisations and unfounded accusations, but in lieu of an ad hominem attack, I feel it is better to debunk the article on its own merits and bases.

Followed by a direct dealing and picking apart of Ntsiki’s various points with regards to points like ‘original heritages and countries of origin’ and ‘stealing lands and making people slaves’ by panning the camera out a little and showing how if you take a far enough back look, you will find that everyone is pretty much guilty of the same kind of  thing.

i really liked the  thinking behind this paragraph on ‘multiple contrasting heritages':

The idea of having multiple contrasting heritages is also not made on logical ground. Yes, technically white people may or may not come from countries where they were the “children” (not literally, obviously) of “Elizabeth, Hitler, Bismarck”, but what of those living in the diaspora, those who were born in countries outside their so-called “homes”? I am ineligible for citizenship in my “homelands” Scotland, France and Britain (so much for being the son of Napoleon and Louis XI, right?), was born in Zimbabwe but have South African citizenship – how then, does my belonging here be erased because a bunch of unrelated humans came before me? In the same light, there are many aspects of these ‘bad’ legacies that can be celebrated: Nazis pioneered rocket engines, Uganda wants to kill gays, and the industrial revolution was thanks mostly to the Scottish people. Any Heritage comes with good and bad: if you chose to celebrate Shaka Zulu’s legacy, you would also have to accept his dark, violent, warmongering side instead of just sanitising his historical image as a faultless black Jesus.

Who tells the story and how we tell it generally has the hugest affect and persuasion on exactly what kind of story is being told. As opposed to necessarily what actually happened.

Matthew makes some strong points debunking ‘facts’ and ‘claims’ that Ntsiki makes, demonstrating them to rather be ‘opinions’, but sadly this is where his emotion starts to take over and what might be well thought-out arguments loses some credibility and likely audience, through the use of descriptors such as ‘weasel-wording-y’ and ‘a magnitude of imbecility that defies description’. Point made, audience lost perhaps. Especially those who already approached the post from an antagonistic stance.

 So, some really good points to be made and read and understood, but also some emotional language to avoid so as not to lose all the good. Matthew might have led us to believe that he was going to debunk the article on its own merits and bases, which he does a lot of, but he can’t resists flinging a final piece of emotionalism to close off his piece.

In short conclusion, this article is nothing but a condescending, patronising, baseless bunch of unfounded opinions and childish assumptions that lead up to grotesque mess of hatemongering drivel. The author should, in future, not be so clinically myopic or as viciously race-hate hungry.

MY THOUGHTS

As someone who has been living in Americaland for the last three years [and been paying careful attention to a lot of the goings on over there with cases like Trayvon Martin and the Ferguson shootings and more] i am pretty convinced that i am not the best person to be speaking into the race/reconciliation/diversity conversations that are so necessary in South Africa, which is why the majority of the posts in the ‘Race’ section of my Taboo Topics’ space on my blog have been written by other people so far, and why a lot of my thought on ‘White Privilege’ were informed by the situations around us in Americaland.

What i DO believe though is that these blog posts are important – all three of them – and maybe even more important is to read the comments and try and hear the heart and tone and conviction behind the comments [difficult online, i know] on each of these posts as that is often where you find the heartbeat of the people as opposed to one person’s ideas or thoughts. If 2000 people are liking and sharing Ntsiki’s post [i don't know if that's the number - might be more, might be less] then we can’t simply dismiss it as ‘one person’s opinion’ and if it is our friends who are the ones sharing it, then that seems like a great point of connection for good healthy conversation.

And that we REALLY need to be talking about this stuff. Apartheid as an official thing might be dead but its roots are very much alive and unless we keep on cutting them off when they appear, or doing the hard difficult, maybe even dangerous work of digging under the ground to remove them completely, things will not change.

I’m leave you with some thoughts and a response from my new friend Ambu Madilonga [well almost friends, he hasn't accepted my request yet on Facebook] who posted this to Ntsiki on Facebook, which i think contains a lot of generous Truth:

Molo Sisi…

I’m a SOWETAN (born and raised, in the 80s), a son to political activists (one of them being a veteran in the ANC, SACP& SANCO) and am Venda/Tswana.

I have to say I shared your post on Facebook because it is thought provoking and would like people I’m friends with to engage with such thinking.
Your posts suggests,I think, that you are a great person who is very passionate about her South Afrika and her people. But it also suggests that you are upset with certain people and issues in our beloved country. Now, when you express issues from a place of anger, you need to be careful that you don’t overshadow the good points you are trying to put across with emotion filled statements.
Although I agree with certain things here, I must say that some points here were made without any research and make you seem very impulsive (don’t mean to judge, sorry if it comes across that way).
Yes, Some white South Africans still undermine Black South Africans.
Yes, Some white South Africans still think Black South Africans are dumb.
Yes, Some white South Africans still think they are superior to black South Africans.
Yes, Some white South Africans still don’t wanna engage/interact with Black South Africans.

Oh and yes we all must remember our heritage and not overshadow it with just braaing (Rev Tutu is going to kill me for saying this, because he was the spokesperson for National Braai Day in 2007)
And celebrating is going to be messy, I mean can imagine all cultures in SA celebrating their own heritage? But it would be a beautiful mess none the less.

But please..
NO, Let’s not kick anyone out of SA (unless they are here illegally and harming our people and land)
NO, Lets not remind anyone that they are the minority.
NO, Let’s not do what their forefathers did (Racism, Apartheid and Hate speech).
Rather…
Let’s teach them what their ForeFathers did not teach them, what we (black South Africans where taught by ours)
“If you want to make peace with your enemy, you have to work with your enemy. Then he becomes your partner.”
“If you talk to a man in a language he understands, that goes to his head. If you talk to him in his language, that goes to his heart.”
“If the ANC does to you what the Apartheid government did to you, then you must do to the ANC what you did to the Apartheid government.” -Mandela

BLACK AND WHITE South Africans HAVE A RESPONSIBILITY
- To make friends with each other
- To respect each other
- To learn from each other
- To lead together
- To forget the Crappy past and embrace the present and work for a good future for all.

All of this starts with people like you and I who are in strategic places or have circles of influence.
For example, I’m friends with both whites and blacks and so I teach blacks that some whites are not bad and I also teach whites that some blacks are not bad. Practically, I invite my white friends to SOWETO and take them on long drives and visits to the beloved township. There I teach them our history briefly, feed them our food and show them our places. I very gently suggest that they atleast one of the Black african lingos (like a white South African in KZN, i tell them to try zulu). I do the same with my black friends and family. I bring them to the suburbs to hang out with the whites.

Of course its easy to say what’s in our heads when offended but we need to be careful to not go public with those before we have processed them first.

Hats off to you for your bravery and speaking out. You are one of the people that we need to help this country be what it can be for all.

Ndo Livhuwa nga maanda

Be blessed.
Ambu.

Ps. to you who commented on this in a less than childish way… SIES!

[For more Race-related conversations from a number of different perspectives, head over here]

 

noah1

I am a mom to a child with special needs. This is not something we were prepared for or ever expected. Noah looks like a normal little boy and his disability, for want of a better word, is not visible. It makes it easier and infinitely more difficult for him. Because he is not visibly disabled there are no allowances given for what he battles with every day. He is labelled as naughty, undisciplined, disobedient and a daydreamer. Noah has a learning disability coupled with ADD. He also has Auditory Perception difficulties.

Here is his story. Noah arrived two months premature after my waters broke due to an infection I did not know I had. His prematurity meant that he had a big delay in milestones. It put him in the high risk category for learning difficulties and behaviour problems. That he left the hospital at all is a miracle. One of the worst things I was ever told was that my beautiful boy would need extensive therapy to ever be normal or to walk properly.

noah2

This was told to me not in love but in spite by someone who should have known better. I have developed a much thicker skin over the years but at that stage I was very distressed. Please be careful what you say to a mom whose child is slower or different. We love our children just like you love yours. We are very sensitive to criticism and as we ourselves are learning day to day about our child’s ability, don’t make statements about their future when we ourselves have no idea what tomorrow may bring. Just love us and our special children, support us and if you do not know, ask. We sometimes just need a shoulder to cry on.

Noah has never suffered with the health issues that premmies have but he battles with a number of learning difficulties. We are fortunate to have had an excellent paediatrician and Grade RRR teacher, both of whom helped to identify learning difficulties early on. While Noah is physically healthy, emotionally he functions at a younger age than his peers. He is impulsive and has little concept of delayed gratification. He gets frustrated very easily. He doesn’t stop to think of the consequences of his actions which has led to some hair raising near death escapes. It also leads to huge discipline problems as he does what he wants without thinking of the consequences to both himself and those around him. He also has a hair trigger temper which he finds nearly impossible to control when he loses it. I am the mom in the shop whose child has to be carried out shrieking his head off.

He has an auditory perception disorder, which means that while he is perfectly able to hear you, he battles to process what he is hearing. He will often ask us to repeat what we have said a number of times. He battles to understand what is being said in a group. If you do not look at him when you talk he battles to understand what you are telling him to do. He also assumes that if you are not looking at him you do not hear him. If there is any ambient noise, like the radio, television or people talking he also battles to understand what is being said.

He has attention deficit disorder, a label which is bandied about and which does not sound too bad until you live with someone who struggles with it. ADD means that he battles to concentrate on more than one thing at a time, he cannot follow orders if there is more than two steps in the process, he is easily distracted by anything and everything around him. He battles with low muscle tone, balance, poor pencil grip. These all make basic activities such as eating, climbing a jungle gym or learning to write difficult. Please do not just take for granted these things if you have a normal child. They are a huge blessing.

When we finally had a name for what Noah battles with and we had to face the reality of putting him in an LSEN school, it was a huge blow to our family but also a relief. It took my husband and I a very long time to work through the reality that our son was not “normal”. It was a period of grieving for me as I had to put aside all my dreams and expectations for Noah and come to realise that we now have a new normal. His sister also bears the burden of a brother who is different. She gets distressed when he loses his temper. She compensates for him and helps him when he cannot understand something. She is very patient when he has taken so much of our attention and has also had to grow up a little bit faster than necessary.

We are a family who were not given a manual when our special son was born and so mostly we learn as we go, all of us making mistakes as we learn how to parent Noah and he learns how to live with this package he has been given. He is in a special needs school. We have no idea if he will ever be able to mainstream. We are told that his problems may improve to the point where he will be able to go to a “normal” school. But they may also not improve or he may never be able to function in a mainstream school. He battles to function in his day to day tasks and this may be something that will always be part of his life. We are so grateful for every milestone reached. For the first time this year his report card said that he was average. I cried. Average is so much better than getting 0’s or 1’s.

Please, stop before you label a child as naughty. Get the facts straight. As parents of a child who does not conform to society’s standards of normal we are doing our best to raise our special son and he is doing his best to deal with the package he has been given.

Thanks,

Lauren

[If you would like to follow more of Lauren's crazy journey, you can head on over to her blog at seasonalsanity.blogspot.com]

[To read other stories of People Living with Disability, click here]

If you go and watch just one show during the Cape Town Fringe festival happening over the next ten days in Cape Town, then go and watch another one as well and let is be ‘The Brother Streep: Stand-up Musician’ at the Dragon Room, which is happening every evening for the next four nights.

Witty, catchy, laugh out loud funny in places and just completely silly and clever, this five person version of the two man band that has been bringing mirth and merriment to audiences around small venues in South Africa for years [in between writing theme tunes for Pop Idols, appearing on the Graham Norton show via satellite to sing their homage to Anna Paquin and being the Steri Stumpi jingle song guys].

You don’t want to get caught sitting in the front row because they might get up close and personal with you [although not in a die-from-embarrassment Corne and Twakkie way] but you also don’t want to get caught sitting in the back row cos lead singer Simon Streep might actually [like he did last night] pick you up on your chair [i doubt he would have managed it with me] and carry you to the front as he did for some poor [but lighter than me] woman last night. Although wherever you sit, you will still be expected to sing along with them when they whip out their generic school theme song that perfectly describes your time in that institution where Geography told us clouds were water based natural phenomena, while Computer Literacy informed us clouds were places for storing data [so confusing].

What you will get is an evening of fun and silly and very clever [or was that painful? or both] word play that will no doubt have you smiling and laughing and tapping your feet.

With moments of perplexion [it's a word!] as they sing a song titled ‘The day after Christmas’ which is all [obviously] about people watching sport to see fights break out, or fight amongst themselves about whether they will sing a song about Restaurants or Politics [with the five person band somehow managing to be cut right down the middle on that one] and even a balladic love song by Dylan Streep on his love for Disney princesses – don’t be fooled by thinking you have what they’re about until that very last line and yet another AHA moment.

And even when they mess up. No, wait, was that a mess up? No, it’s part of the show. Or was it? They  do it so creatively, or was it that they planned all that beforehand? That it is so hard to tell. The Improv and scripted moments go so hand in hand that it all feels like a spaghetti bowl of assortedflavourments.

streep

There may be better shows at the Fringe [they will suggest that to you themselves] but i doubt there will be any quite as fun. And go prepared with your hundred bucks to get one of their newly produced cds [they may mention it for a moment from the stage] so that you can be taking these catchy songs home with you and sharing them with your family and friends.

Don’t miss out. You really should go and watch the Streeps, ahead of the rest.

 

Yesterday was Heritage Day in South Africa.

a number of the museums were offering free entry and tbV [the beautiful Val] suggested that we go and visit ‘The Slave Lodge’ in town.

being the museum-loving guy that i am [not quite as much as the raiSIN-loving guy i am, but close] i built up some enthusiasm and Yes, Let’sed along with her, cos i knew it was something she wanted to do.

and, like with a long hike, or pretty much anything outdoorsy, by the time you actually get me there, i do tend to really enjoy it and so i am really glad that i went.

i think ‘fun’ and ‘enjoyable’ are not the right words to describe a visit to a place used as a symbol of incredible torture, racism and unjust incarceration, but i guess a sense of ‘i needed to see this and be reminded again’ if that could be encapsulated by a single adjective would be the word i would use.

HIGHLIGHT

the most powerful room for me was an exhibit focusing on women throughout the apartheid struggle, both black and white, who had played some key role in different ways. The exhibition is called ‘There’s something i must tell you’ and it is by Sue Williamson and if you are in Cape Town you should really try and make the time to see it.

sue

From Albertina Sisulu to Helen Joseph to Mamphela Rampele and more there is a series of screen-printed protraits of women who were involved in different ways in the struggle against apartheid.  One that had a profound impact on me was a woman named Jeanette Curtis Schoon, who, with her six-year-old daughter Katryn, was killed by a letter bomb meant for her husband in June, 1984. Not because her story was any more profound than any of the others, but because there was a six year old caught up in it i guess. What an absolute mess our country has emerged from. No wonder there are still scars.

MOMENT OF TRUTH

We also watched a fifteen minute movie on the slave trade in the Western Cape and as we heard about the conditions on the ships used to bring slaves to South Africa [which i never knew - Dutch East India Company's early missive to those in South Africa was don't make slaves of the locals because you don't want to cause trouble - we will ship you some of ours, which meant from India and China and other places] i found myself responding with a very strong, ‘HOW COULD THEY?’ which was followed up by quite an immediate, ‘HOW COULD WE NOT?’

Yes, what happened in this country was particularly horrific and unacceptable, but i’m not sure that we’re all that better. While ‘the people of the past’ propogated racism and slavery, we tend to sit back and allow [or maybe more purposefully ignore or pretend it's not there] injustice and not even act as if it is a problem.

What sucks hugely for me in this matter is i don’t have the answers. i drive past ten thousand shacks every time i go to the airport and i don’t know how to ‘fix’ it or even ‘make it a little bit better’.

i drive past women in the street offering themselves for an evening, or is it an hour, of pleasure at their expense, and i know it is so completely wrong, as is the system of fear and power and ‘ownership’ that keeps them there, but am not sure of what to do in any way or form.

People at the traffic lights begging for money [how great i have gotten at looking busy or not making eye contact, or maybe just how easily i throw out a 'No, sorry' although i am trying to be better at making eye contact and smiling and initialising some kind of communication to at least be acknowledging their person'ness]

And on and on.

DAMNED IF YOU DO, DAMNED IF YOU DON’T

diff

So we are in a place of wanting to make a difference. Somehow. To someone [or hopefully someones]. I feel like too many people around us are just happily and comfortably living their lives without even giving any of this stuff any thought. At the same time there are a whole lot of people giving this much more thought than i have and making much more of a difference.

But figuring it out can be difficult.

tbV and i are taking time to choose where we will live for the next part of our journey in South Africa and even taking time to be intentional in where we might live has been judged [in the commentary section].

Shenaz told us we were being too gangster:

It is getting boring hearing about you going to poor areas. Often these people are not as clever as you and out of a job. They are basically losers (don’t mean it in a bad way), who are hard to help. But always you are on a platform above them like a man feeding dogs at a kennel. It is the same, same, same – maybe you should consider going to a place where the people are more clever and successful, and try to change their minds instead? Preach outside Caprice on Camps Bay for example. These people are dropping R1000 an evening or more. I’ve heard of some at Shimmy Beach dropping R10K for a bill. This is SIN! Real SIN! Go there – go preach to these people. That my friend is a challenge for you and it could make a huge difference. Imagine convincing a queue of people to donate R100K to help the poor instead of using it for cocktails? Be a street preacher on Camps bay this summer and change things. Otherwise you’ll be on the streets of some area – helping another tik-kop or whoever and its circular – they go back to it usually. Go to Camps bay and get people of power and influence and money to help. I know you don’t want to hear it as you are in your comfort zone of helping the less clever, losers (as above) and you know how to handle that. TIME FOR A CHANGE.

While Sean didn’t think we were being gangster enough:

 Woodstock and Salt River is very trendy. Where do you guys get the cash to live there? If you really want to be “intentional” then why don’t you go live in Langa? The answer is because you don’t and that is understandable because of the crime. Kayamandi is like a walk in the park compared to places like Langa or even Lavendar Hill.

I suspect the answer might be, to some extent at least, found in making changes that are both huge and small.

Starting to recycle [we did this a lot in Americaland and it is something we would love to see happening on a more effective scale here] and encourage our friends to do the same. Buying fair trade and Free Range where possible and at least being intentional in terms of our consumption in a variety of ways. Figuring out how we do generosity and how we encourage those around us to do the same [Actually since coming home we are beyond well aware how incredible may of the people in our lives are at doing generosity - so making sure we follow suit i guess]. It might be paying attention to and sharing conversations on equal rights for women [like Emma Watson did so succinctly in her speech to the UN over here] or the environment [like Leonardo DiCaprio did in his 'I pretend for a living, you don't' speech to the UN over here].  Starting to plant our own food and perhaps be part of a local space where others are encouraged to plant theirs.

It might be having conversations on race, particularly issues like racism and reconciliation [or following those already happening like over here] or human trafficking [like getting involved with Jamie the Very Worst Missionary and her team over here] and more.

It might be allowing bigger decisions be affected by the choices you make to make a difference. Like where and how you choose to work [Maybe there are some industries we should not be prepared to work for/with?]. Or where and how you choose to live. What you do with your resources – which includes time, money and skills or education.

Overall i guess it is summed up as living with purpose. Which is a message for everyone. But as a Christ follower, it feels like a particularly apt message for me. After all, close to 2000 verses in the bible call for me to get involved with the poor and needy and those who are considered by society as ‘the least of these’. How do i do this in the best of ways? I’m not sure yet, but help me to figure it out.

i read this quote online today and it feels true, at least in the collective sense. in the individual and family sense i still need to think about it some more.

‘When a poor person dies of hunger,it has not happened because GOD did not take care of him or her.It has happened because neither you nor I wanted to give that person what he or she needed.’ [Mother Teresa]

i dunno. this conversation has a ways to go. but we can’t do nothing. and throwing stones at me while i try do something doesn’t feel like it helps an awful lot, either. so meet me around the coffee table or have us over for dinner. or come to one of ours that we hope to throw soon. but let’s be working on this together, because i feel like together is where the solution to this lies.

 

manenberg

My new friend, Portal Pete [as i call him, or Pete Portal to his other friends], shares some thoughts as to why he and his wife Sarah decided to intentionally move into Manenberg:

“Why would you move to Manenberg?”

“Christianity is an invitation to be part of an alien people who make a difference because they see something that cannot otherwise be seen without Christ. Right living is more the challenge than right thinking.” This means that “what makes the church ‘radical’ and forever ‘new’ is not that the church tends to lean toward the left on most social issues, but rather that the church knows Jesus whereas the world does not. In the church’s view, the political left is not noticeably more interesting than the political right; both sides tend towards solutions that act as if the world has not ended and begun in Jesus. These ‘solutions’ are only mirror images of the status quo.” (Stanley Hauerwas: ‘Resident Aliens’)

I believe that there are simply no economic or political solutions to the economic and political problems the world faces and itself generates. If the assertion that God (and not capitalists or terrorists) rules the world, then it logically follows that only through Jesus’ sacrificial love ethic will the transformation of communities, societies and nations be possible.

Let’s get personal. Last October, my wife Sarah and I felt God ask us if we would move into Manenberg. We had recently arrived back in Cape Town from a year studying in London, and were initially looking for a sweet little Victorian cottage in Observatory. But we couldn’t let go of the deep-set feeling that commuting from the suburbs into Manenberg each day would just perpetuate the unhealthy prevailing narrative of whites going to ‘help’ those living in townships. The fact is, ‘being with’ is a lot more meaningful and generative than ‘doing for’.

And so – in April this year we moved in. Best decision ever, because it has allowed us to listen to, learn from, and be friends with, those whom we would never have otherwise met. Put slightly differently – when you are neighbours with someone, you develop an equal relationship based on familiarity and friendship. When you visit somewhere to ‘help’, ‘minister’ or ‘serve’, you develop a skewed relationship based on providing something. (Sidenote – I once heard someone say ‘the poor [whoever you think they are] don’t need soup and shoes – they need a place at your table for the next twenty years.’ I couldn’t agree more. Though, it’s those the world views as rich who would really benefit from eating with those seen as poor – not vice versa.)

I believe that if Jesus was alive in human form today and moved to Cape Town, he would live in Manenberg – or somewhere like it. And so, if the Christian life is about trying to follow Jesus, and be like him in everything, it seems quite clear that more of us should be living amongst the poor, traumatized, disempowered, violent and addicted.

Here’s my reasoning:

Jesus came from an accursed and belittled place. (John 1:46)

He himself was financially poor. (Luke 2:24 – his parents offered two doves rather than a lamb – a sign of their financial poverty.)

He seemed to spend more time amongst the poor and marginalized than the influential. (Mark 2:15)

And he was misunderstood for doing so. (Matthew 11:19) 

Might Manenberg be a contemporary equivalent of Nazareth – accursed and marginalized? Guess so, based on newspaper headlines and conversations I’ve had with Capetonians: 

 

“Manenberg?! No man, those people aren’t right.”

[Middle class coloured friend]

 

Or… “Listen, what you’re trying to do is noble, but those people will never change, they’ll just take advantage of you. Look, you don’t understand them like we do. There’s a reason people don’t go into those areas.”

[Middle class white friend]

 

Or… “You mustn’t go there – it’s too dangerous, the people are evil.”

[Black lady I met in a taxi].

 

Are Christians commissioned to walk as Jesus walked? Yup.

Is discipleship about ‘being Jesus’ to the world? For sure.

Might this mean exposing the first world myths of ‘quality of life’, ‘security’ and ‘comfort’? I reckon.

What about the apartheid mindset of fear and division? That too.

Does it not then follow that to move into Manenberg actually makes more sense than not?

 

Ah – hmmm – about that…

[For the post i wrote on Intentional Living and trying to decide where we are going to live next, click here]

Follow

Get every new post delivered to your Inbox.

Join 495 other followers

%d bloggers like this: