Taboo Topic: Living with Disability – meet Steph Mclennan [Ataxia – Mild form of Cerebral Palsy]

“Why do you wear those things on your knees?” “Look at Steph, she is so slow. Ha ha!” “Why can’t she run and jump like a normal kid?” “Steph you’re a freak.”

These are the refrains that followed me around as a child born with the mildest possible strain of Ataxia, which is a form of Cerebral Palsy. As an adult, I am incredibly fortunate that I now live a “normal” life, have a “normal” appearance, and nobody could ever tell that I have CP. As a child, it was a very different matter.

My parents realised there was something wrong with me when I failed to meet any of the physical development milestones as a baby and toddler. I was taken to a specialist, who diagnosed Ataxia. “She may walk one day,” the good doctor told my parents. “She will never run or lead a normal life.” I have often thought about taking a jog past that doctor’s home. That is my first message: While doctors are obliged to be pessimistic, they are not always to be believed.

I started pre-primary school at Browns School for disabled children. Six months before I was due to start grade one, I was moved to a mainstream school, and it was here that my personal hell began, and it continued unabated until I started high school.

As a five-year-old, I can remember being held up against a wooden locker with a girl’s hands on my shoulders and having her shake my whole body body to make her point, because she could, and because I was physically unable to defend myself while she displayed her “power”. My mother tells me that she had to keep me at home for a day so that the teacher could try to explain to my classmates that I was, in fact, a human being with feelings.

The cycle continued through primary school, worsening in Grade 5 when, due to repeated episodes of my knees dislocating due to the lack of muscle tone, I had to start wearing knee braces. Not the fashion accessory a ten year old girl who already had coke-bottle glasses wants to be sporting. Here is another thing parents of disabled children need to know: the cruelty of children knows no bounds, and teachers often do not see it, or choose to ignore it. Your child, if he or she is anything like me, will not tell you the severity of the hell that they endure. Firstly this would mean reliving their ordeals in the safety of their home, and secondly they know the only solution is to not go to school, which no parent would ever allow.

From Grade 8 onwards, kids tended to leave me alone rather than pick on me, and life started to slowly improve. I breathed a massive sigh of relief in Grade 9, when my knees were declared strong enough that I no longer needed to wear the knee braces. However, I was still known as the kid who had been disabled, and it was only when I started university that I was truly able to start a “normal” life, and be seen as just the same as everybody else.

Another thing that parents MUST do is ensure that their child fully understands what is wrong with them, what their limitations are and how any treatment is helping them. I never fully understood the logic behind needing to wear knee braces and do vast amounts of tortuous exercises every day. If I had, I believe I could have made this time in my life a shorter one.

I have often wondered whether it would have been better for my parents to leave me in schools for disabled kids right to matric. If you are the parent of a disabled child, I urge you to think twice before putting him or her into a mainstream school. As I said, “normal” children will squash the joy out of every one of your child’s days, and while they may physically be up to the challenge of mainstream school, the emotional ramifications will be huge. Those scars are the only real remnant of Ataxia that I will carry with me all my life.

[To read more stories from People Living with a variety of Disabilities or Special Needs, click here] 

Taboo Topic: Living with Disability – meet Kashveera Chanderjith [Deaf]

AN INTRODUCTION

It is a silent world, a world devoid of sound. It is an abyss of unknown tunes, of unheard melodies, of nameless songs. The world I belong to is a world where I wake up not to the shrill of an alarm clock, where I walk at the edge of the sea, but cannot hear the waves crashing upon the shore, where I cannot hear dogs barking or the birds flutter above me. I cannot hear the voice of my mother, nor can I hear my own voice. It is silent.

It is a challenge in itself to learn to speak when you have no knowledge of how a word even sounds like, and also to be able to articulate in a fashion that another person can comprehend takes many years and a lot of determination along with a strong desire to succeed. I think I have a lot to be grateful for in the sense that my parents had not opted for an easier path but rather one that would make me self-confident and self-sufficient, two great qualities required in this independent age. My disability, although a huge challenge, was overcome through four things, my parents thirst to equip their child with all the basic communication skills to enhance the quality of my life, the constant support of a very close knit group of family members, my everlasting desire to achieve academically and professionally and fourthly and most importantly through divine intervention.

In terms of medical science, it was a given that with the severity of my hearing impairment, there would be no doubt that I would never be able to speak, so I could almost say that what I have done has defied medical science in the greater scheme of things. Doctors recommended that due to the fact I would not be able to pick up any form of language or speech, it would be wise to send me to a school for the hearing impaired and learn sign language as a form of communication.

I made very solid progress, my first spoken word was “flower” and the second spoken word was “aja” meaning grandfather in Hindi.  My parents had kept a little black book to record all the words that I pronounced, but soon the words were too many and the pages too few. I made remarkable progress academically as well, besides the rapid advancement of my speech. I had a great love for learning and a greater passion for reading, of which I am an avid reader and this perhaps contributed to my learning progress in a beneficial manner.

THE ACADEMIC JOURNEY

I went to a number of schools, started off at the Durban School for Hearing Impaired at the age of 4, where I did not fit into the environment, and after struggling there I was placed into the Holy Family Convent, which was also a bit of a challenge, as it was a single deaf child in a hearing classroom.

I then moved on to Stellawood Primary School then, now renamed as the Durban Primary School which had a dedicated unit in the mainstream school, called the PHU (Partially Hearing Unit). This school was to set the foundation for most of my life’s achievements, as the teachers, Mrs. L. Diamond & Mrs. P. Jackson were absolutely dedicated to making us self-sufficient, intelligent & speaking individuals. We learnt how to speak and read on the same level as learning the normal syllabi. It was imperative that we read, because our teachers believed that reading aids speaking. I had the best years of my life in primary school, and owe my great love to succeed and persevere to my teachers in primary school.  My primary school years set the foundation for a lot of the success in my later years.

I then went on to matriculate at Crawford College, writing normal matric examinations. I matriculated with 5 distinctions, doing 7 subjects all on the Higher Grade. I also received distinctions in both my languages, never mind the fact that I was told that I would not be able to grasp language.

I then enrolled to do my bachelor of commerce in accounting at the University of Kwa-Zulu Natal with a Deloitte bursary. I graduated within 3 years, without failing a single subject, and became the first deaf graduate in the history of the University of Kwa-Zulu Natal. I then proceeded to do my honors at UNISA and graduated within one year with my second degree, honors bachelor in accounting science in 2008. I also received the Golden Key Award for academic excellence whilst in my first year of studies

I then went on to complete my articles for 3 years at Deloitte Durban, on my road to becoming a fully qualified chartered accountant, and passed both my qualifying board examinations on my first attempt, and then became the first deaf chartered accountant in South Africa.

THE TOOLS

My primary school, I cannot stress enough and probably won’t be able to stress enough, is probably responsible for the great success that I have attained today.  When I stand up at a national level to deliver speeches, or when I stand up in a boardroom to discuss business strategies and operational efficiencies, the simple teachings and principles that I learnt at school under the competent hands of my teacher (I had the same teacher from Grade 1 – Grade 7, Mrs Diamond) serve to guide me forth and this humbles me.

A lot of my dear friends that I’ve been fortunate to spend many memorable hours with here at the PHU, and who have been moulded to outstanding men and women today, will remember, the emphasis placed on a holistic education, blending reading, oral communication and life skills into creating self-sufficient, independent individuals who have accepted their disability and have risen above it more importantly.

I have a huge collection of photos from my primary school days, the camps we had been on, the nativity plays that we painstakingly put together, the multitude of crumpets that we made in order to raise funds, the warmth of our classroom, the birthdays we celebrated together…as I am in my adulthood, these memories seek to inspire me and allow me to believe in the goodness of humanity. I actually believe the fact that we were sent on camps sought to teach us a great gift of independence and resilience. Sent into the outer world, we were forced to adapt and more importantly learn to live with our disability.

For the great vision that the PHU had and the progressive thoughts that they had in the bygone days,  serves as an example of what exemplary education can achieve and therefore how it can sustain a nation by means of productive learners who can and are able to make a positive difference in our beautiful country, South Africa.  Stellawood has been one of the schools that had embraced diviersity, transcended the barriers of disability and the whole concept of a rainbow nation quite remarkably.

This school has taught me to persevere, to awake and arise with courage and conviction, to be determined and steadfast in achieving my dreams.

THE LIFE

Inclusiveness has been the greatest barrier that I have encountered in my everyday life.

It was hard in the beginning to accept that I am different from my family members in the sense that I have a profound and severe hearing disability, but once I came to the acceptance of my disability and the determination to make it my strength rather than my weakness, it was no obstacle for me.

However, there were a few challenges I faced in my life, notably the fact that it is a given that you pick up one third of a conversation and lose the other two thirds, therefore in an academic situation my learning was a bit of a challenge, but I always rose up to it by working twice as hard as I normally would and making the sacrifice in the conquest of academic excellence. I also ensured that I studied hard at school, and at university and even when I wrote my professional qualifying examinations. I used to sit in the front of the class or in the front of a lecture room, and still have the habit even in a meeting to sit in the front.

There were instances when I was mocked, or made fun of, because I sounded different, but then I always rose above that, and strived to see goodness in everyone and everything. There were times when I was discriminated against, but that along with being painful gave me the great strength to get up and face my battle head on. There was this constant human rights battle which my father spearheaded for the vast majority of my life, the right to dignity, the right to education and the right to be free and heard.

I also had some sacrifices that I had to make, for instance in the pursuit of obtaining language skills and developing the ability to speak I had a very limited childhood, in the sense that whilst other children played on the swings and with their toys, I was constantly learning. We were fortunate that we had the right guidance from the Carel du Toit centre in Cape Town, where we went as often as we could to the parental guidance programmes where they equipped us with learning techniques to aid the facilitation of speech. Professor Carel du Toit had no methodology for his practice other than he believed that if you talk to a deaf child, the deaf child will talk back to you!

I have client-facing roles which require extensive interpersonal skills. My clients have been more than understanding, most of them actually amazed and inspired. I have spread deaf awareness through corporate channels as well through a multitude of client interactions and have had the great fortune to break many perceptions including the perception that the deaf are dumb, which they are not, unless they choose to be. My struggle for inclusiveness is far from over, overcoming barriers was part of the journey.

THE KEY

I think acceptance of my disability and making it my strength instead of my weakness was a remarkable feeling because I utilised that strength to attain whatever success I may have attained. It was also then that I was able to distinguish between my priorities and instead of remaining complacent, tried to rise up to achieve and lead a dignified and respected life.

I know I am different by design, but that hasn’t stopped me from walking a path that is different and setting the bar so that others can rise up and aspire for their dreams too.

I think I have my parents to credit for the enormous strength and fortitude that I possess, because it was through them that I have managed to sustain through many battles, many hardships and still triumph still.

AURAL-ORAL

Aural-Oral is learning to talk and communicate by lipreading, talking and also comprehending facial expressions in order to make sense of conversations. It is the method primarily taught at the Carel du Toit centre, however, it is a much harder method to practice and requires a lot of time and dedication, initially it is very frustrating, however rewarding at the end.

This method was achieved by my parents talking as normally as possible to me and after my diagnosis they focused entirely on lip-reading and aural training. They adhered very strictly to the guidelines set by the Carel du Toit centre in Cape Town such as speaking and being at my level, continuous repetition of basic and advanced sounds and words as well and oral (learning the spoken language) & aural (articulation ability), this was combined with learning the technique and skill of lip-reading.

I was taught primarily by my parents who made everything a lesson for me, I couldn’t play freely on the swings like other children because it was my lesson, when we were in the kitchen, cup, water, tap…were repeated continuously to me, so it began that every minute of the waking day was spent learning to talk.

THE “IMPOSSIBLE” OVERCOME

In the end, a lot of inclusive education lies in understanding diversity. The importance of cohesion and peaceful co-existent of disabled and abled individuals needs to be a standard benchmark for society at large to implement and embrace.

I believe that all of the learning starts at a young age, once basic language has been grasped and a great love for learning cultivated, it will not take long for academic excellence to take precedence over language and communication erudition.

Whereas I am a firm believer of reading as the means and mechanism to enable advanced communication, this is not being implemented stringently enough in modern schooling systems. Due to my overwhelming love for language and literature at large, I feel that my manners of expression are varied and as such language does not become a barrier but rather a way to prove the impossible, possible.

I will be the first to admit that there is a lot of emotional trauma that comes with the discovery of any disability, but the system and support structure needs to be in place so that one can be comfortable with the disability and learn in essence to overcome it. Denial of a disability rather than recognition of it will only be to one’s detriment. It forms the basis of the attitude, and once the attitude of self-pity is set on stone, it will take many more days to rise up from it to become self-sufficient.

The schooling system needs to provide for innovative methods of integration to allow the disabled person to feel included to prevent the onset of a personality and identity crisis. It is critical to consider the overall emotions and appreciate the difficulties that the deaf individual has to undergo.

Having said a lot of things, I will also acknowledge that whilst support structures can be put in place, whilst government and legislative influences can become known and whilst people slowly transform in their overall thinking, if it is to be, it has to be up to the disabled individual alone to aspire for whatever greatness inspires them so.

THE LESSON

If there’s anything I’d like to say to everyone, be grateful that you have all your faculties, and therefore use them wisely for the disuse of them is a great insult to our maker. Further, treasure your hearing for once it is lost, it will never be replaced again. Above all, I’d just like to say that when two roads of life appeared before me, I always chose the road that was different and less travelled on, and that has made all the difference.

Follow your soul – be a first rate version of yourself and not a second rate version of anyone else.

With my very best regards,

Kashveera Chanderjith

[To read the story of Susannah sharing about being a mother to a daughter, Monrovia, who is deaf, click here]

[To read other stories of people living with a disability or special need, click here]

 

 

Taboo Topic: Living with Disability – meet Susannah Prinz and Monrovia [Deaf]

Our eldest daughter Monrovia, who is now six and a half years old, was born profoundly deaf. We first heard the words “profound hearing loss” when she was three weeks old, after failing multiple hearing tests. At the time I felt pretty overwhelmed by first-time parenthood, so the idea of parenting a newborn with special needs felt quite heavy and scary.

Here’s an excerpt from an email I wrote to friends after the appointment in which an audiologist told us she was deaf:  “We chose the name Monrovia for a very specific reason, and now it seems more fitting than we could have predicted. When I spent time in West Africa, part of the time was in Monrovia, the capital city of Liberia, which had been devastated because of the awful Liberian civil war. My Liberian friends would always describe how beautiful the city had once been, and would speak with hope of what the city could become, even though it literally was falling apart. That image, of having great hope despite the surrounding circumstances, resonated with Matt and me. We wanted our child to be a person of hope and beauty even when that wasn’t what life or the world looked like at the moment. And here we are. In a place that seems so dark at the moment.

We hold this grief with the knowledge that even with M’s hearing loss we are so blessed, gifted, and privileged with a delightful and perfect child. At the same time it does feel that our immediate little world is crumbling, and we bear the weight of so much sadness right now. It sort of feels like we got robbed of this joyful beginning part of her life. Instead of just enjoying our new daughter, we are scheduling doctor’s appointments, handling insurance and specialists, researching hearing loss and learning an entire new glossary of terms. Most of all, we are incredibly broken feeling. So at the moment we are processing this, and coming to grips with a new reality for our lives.”

Six years later I can’t imagine any other narrative for Monrovia. Deafness, the word that I was initially unable to say without crying, quickly became our family’s normal. We deliberated very carefully when Monrovia was an infant and decided to pursue cochlear implants for her in order to give her access to sound. Implants do not fix deafness (nor was that our intention), but they mimic the way a typical hearing person’s hair cells work and enable some deaf people to develop spoken language. Monrovia had surgery when she was 9 months old; her implants were activated and she heard her first sound a month later! Having a deaf daughter has been one of the richest and most amazing gifts of my life, and it has shaped so much of our family’s life together.

I wouldn’t change either Monrovia’s deafness or our decision to get her cochlear implants, but there are aspects of having a deaf child that I wish others would know:

* Our complex feelings about her deafness don’t go away. We celebrate her deafness as much as we can and are very intentional about speaking to her deaf identity, but we also grieve what she misses out on as a deaf child living in a hearing world. This morning I stayed after school to watch how she was doing in her class. Within minutes I saw how she lagged behind her classmates in following verbal directions, and how she couldn’t simultaneously listen to the teacher and work like her hearing peers. Yesterday a kid called her name from 5 feet away and she didn’t hear it so the child ran off to play with other friends without her. In the morning the school bell rings at a tone that blends in with the sounds of a busy playground; as all the kids line up she is left alone playing until she looks up and sees an empty play structure. In a noisy restaurant she is completely lost in conversations. If someone speaks quickly she is still processing what they said when they move on to a new topic. Those complex feelings don’t go away, and so I wish the support wouldn’t go away either. Most friends of mine who have a deaf child are continually dealing with scenarios like this. It is amazing (and rare) to have a friend ask, “How are things going with Monrovia? Have you had any hard stuff with her deafness lately?”

*Our daughter is thriving. We are so grateful! She is in a mainstream class, on grade level, and can listen and speak spoken language even though she is deaf. But she works really, really hard. All day, every day! To keep up, to stay on track, to hear what you are saying, to focus, to process, to learn what new sounds are, to absorb new vocabulary. Unlike a typical hearing person, who can passively hear, assimilate and filter sounds, she must actively work at each of those things. So when you say, “I always forget she’s deaf!” I understand. But please know that we never forget; there are hidden parts of deaf life we are dealing with all the time: charging batteries, waterproofing her implants, finding subtitles for the movie so she can follow along, troubleshooting classroom issues (of which there are so many!)…We think about how to handle swim parties or sleepovers or talking on the phone to relatives…We field questions like, “Why does no one else at my school have implants but me?” or “Will I still have to wear implants when I grow up?” One of the biggest issues for Monrovia is that because she presents as a hearing child, it can be hard to convince people that she really still needs support as a deaf child. Yet she does.

*Please don’t say, “I wish I could turn off all the sound and just have silence like she can with her implants. She’s so lucky!” or “I think she kind of likes that she can’t hear everything. I know I would.” Really?! I can’t tell you how often I hear some variation of those comments. It minimizes her deafness and stings every single time. Instead you can ask her what it feels like when she takes her implants off at night, or what her favorite sound is, or when she wants to take her implants off. (Tonight when I told her I was writing this she said, “Tell them at night when I don’t wear my implants I can’t hear anything and I have to sign or read lips which is kind of hard.”)

*She will always be deaf. I know she doesn’t “sound” deaf. That’s because she started speech therapy when she was 7 months old, went to a deaf school that was a two hour round trip commute for four years, and still works hard on her speech and language at home and in therapy every week. I know “you’d never even know she’s deaf!” Yep. She is. I recognize that that phrase is intended as a compliment of some sort, but I cringe when someone says it (which is quite a bit.)  For a long time her implants were the same color as her hair and camouflaged. All the time people would mention, “Wow! That’s so nice that you can’t even see her implants!” What do those comments communicate to Monrovia about one of the most significant things about her? My guess is as a child she interprets the following: It is better if you don’t sound deaf. It is better if no one can tell you are deaf. It is better if your implants blend in.

*It’s ok to talk about her implants or deafness because we talk and think about it all the time. If you see her implants it’s ok to ask what they are and why she has them. After all, even Monrovia can tell when someone is staring at her and wondering what they are. She even has her own response if someone asks. If you have questions about her hearing loss, just ask!

The more people who understand this deaf journey, the more who can offer support and empathy, and the more who can advocate on her behalf and celebrate her successes. Even the opportunity to share this journey with others who listen is a gift to us, and in turn a gift to our daughter.

[You can read more from Susannah by checking out her blog, Good but Hard]

[To read other stories of People Living with Disabilities or Special Needs, click here]

Taboo Topics: Living with Disability – meet Keith Slabbert [Quadriplegic – Broken neck]

Hi I’m Keith. In the early hours  of 26th of August 2012 I was found lying paralyzed on the floor next to my bed. I had suffered a seizure while sleeping and fell to the floor. I had broken my neck by fracturing my C4 vertebrae, which has left me to be a quadriplegic.

I have no wrist or hand movement. I have regained use of my arms from originally not being able to move  them at all. Having movement of my arms has allowed me to do certain things independently once being set up, like being functional on my laptop, brushing my teeth, drinking out a cup and using my  push button cellphone.

One thing that has changed besides the obvious is that my days need to be planned before I get out of bed. Before I could just getup and decide at the spur of the moment to go to the beach or to the movies. Doing anything now takes time and needs to be planned. My body is super heat sensitive and I need to make sure I’m dressed for comfort. I feel the slightest wind breeze on my skin, my arms and neck area’s need to be covered. Being in air conditioned places make me very uncomfortable and my body stiffens up and I eventually get muscle spasms.

With regards to seeing people out in public and those ‘awkward’ moments when people don’t know how to deal with people in wheelchairs. I think people should just ask what happened. I don’t have a problem with people asking, I know they want to know and it would break the ‘awkwardness’ for them.

There is so much more to a quadriplegic than just not being able to walk or use our hands. Our whole nervous system has been shut down and the body has different ways of reacting to different situations. I have no feeling from my chest down, so i am not able to tell if there is a problem with my body for example, a broken toe or any injury, internally or externally. So my body will let me know by twitching or perspiring.

I can go on for days but i think we should leave it there for now…

[One day we hope that Keith will share some stories about that clearly possessed dog he has on his lap]

[To follow more of Keith’s Journey, you can like his Facebook Page over here]

[For other stories of People who are Living with Disability or Special Needs, click here]

Taboo Topic: Living with Disability – meet Shaina Cilimberg [Aspergers Disorder]

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 the story of Keith Slabbert, who suffered a seizure and broke his neck, click here]

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

Taboo Topics: Living with Disability – meet Lauren and her son Noah [Learning Disability coupled with ADD & Auditory Perception Difficulties]

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.

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 the story of Shaina Cilimberg and her struggles with Aspergers Disorder, click here]

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

Taboo Topics: Living with Disabilities – Meet Uel Maree [Spinal Cord Injury – Unfortunate diving accident]

Hi, my name is Uel and pre-December 2011 I was an avid rock climber, swam in the sea a lot, gymed, organized adventure camps and helped out at church.

But in December 2011 i dived into a river and well, i didn’t end up winning any medals for my attempt but did unfortunately break my neck leaving me paralyzed from the chest down…..

I was air lifted to hospital where I spent 100 days, eish. The doctors didn’t have much hope for me regaining any movement below my shoulders and classified me a quadraplegic.

2 and a half years later I can now move my arms and my wrists, i have sensation in some of my fingers and recently my stomach muscles started working… hey, gotta do some crunches for summer.

Life is obviously more difficult now. I can’t brush my own teeth, I can’t scratch my own shoulder, i can only feed myself certain foods if I’m in a specific position, I can’t hold a glass, I constantly fight with my duvets (and they win) if my arms get tangled, I can’t speak for too long without getting out of breath as my diaphragm is weaker, I can only swallow food with my head in a certain position as my throat muscles are stronger on 1 side (weird right?), I pee in a bag cause I can’t walk to the bathroom, I can’t fight off spiders, I can’t stop myself if I fall over, I can’t brush my hair…cause my head’s shaved so I ain’t got any! HA! And the list goes on…..

I’m 6ft2 and so getting me into a car is super tricky and we don’t have a wheelchair friendly car. Because of that, I don’t leave home often but even when I do, after a couple hours my body is tired and I need a bed.

Going out to familiar places and not being able to do familiar things is tough on the soul. Like flying to Hawaii and staying in the aeroplane while everyone else disembarks.

Though going out is good at times but my parents need to carry snacks to feed me regularly so my blood pressure doesn’t drop too much cause then I faint. Oops. I’m not some strange hybrid Transformer creature with wheels glued to my behind. I’m just a guy sitting down in a wheelchair….for now so I’m not quite sure why some people stare at me like I have coodies and they may catch it?

Perhaps in this performance based world where in many countries, if anyone has a disability; they are left to die as infants, or cast out, or put in homes, or even hidden from the public as I recently found out happens in my own back yard just outside Cape Town. But I come from a loving family with the most wonderful people in my life so luckily I’m allowed out into the open and don’t have to live in a bell tower.

In my current condition, when I go out, I’ve noticed 4 types of people:

1) those that try to ignore you so hard that it becomes awkward (like people trying so hard not to look at a beggar).

2) those that stare and gossip.

3) those that act over friendly as a type of over-compensation.

4) those that act normal.

Just to let you all know, number 4 is the winner, do that more and it boils down to education. Not the school/university type of education, but just people skills and realizing that this is what life dealt us. Some are paralyzed, some are born that way, some have an extra chromosome, some catch a disease, some have a chemical imbalance and for some it was an accident but NOBODY chose it so let’s have a little compassion….not pity but the greatest of all – Love.

I think that all kids/teens (and adults) should be exposed to orphanages, homes for mentally disabled people, old age centers, cancer wards etc etc and you know what, you may just be surprised at the wonder and beauty you find there. Let’s stop aiming at producing *celebrities and pro-athletes but start aiming at creating caring people.

Many people in the conditions mentioned above don’t have the most love and support because they often get labelled as outcasts. So be a light in their lives and add a little more shine to this world.

Much love – Uel

*Disclaimer: I don’t have anything against celebrities or pro-athletes and none of them were harmed in the making of this

[To meet Michelle Botha and hear some of her story of dealing with a degenerative sight condition, click here]

[To return to the Intro page and read stories of other people living with disability, click here]