Taboo Topics: Living with Disabilities/Special Needs – Intro

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Taboo Topics: Living with Disabilities/Special Needs – Intro

disability

From my friend, Dalene Reyburn: So, I’m honoured to be hanging out with Brett in this bustling corner of the internet to introduce the next Taboo Topics series: people with special needs.

I think Brett’s a hero for having the courage to open up these sorts of topics – things that are often ignored or misunderstood or too fraught with pain to be voiced. This series will give parents and others a safe space to be honest about difficult – confusing – deflating – journeys. A chance to recapture big-picture perspective, and to glimpse God’s glory.

Our eldest son is visually impaired. My husband and I know the emotional exhaustion – fumbling prayer – making stuff up as we go along – of parenting a child with special needs. We’ve done the pointless projections of long-term scenarios. We know how it feels to carry the tension of uncertainty and the fear that our child’s heart will be hurt by life. We’ve experienced people’s kindly ignorance. Sometimes we feel side-lined and sometimes we feel conspicuous and sometimes we’re tired of feeling like That Family. We’ve done anger (where the hell was God?), doubt (does God even love us? Or love our kid?), and guilt (did we do something wrong?). And every day we know the terrifying joy of watching our hearts walking around in someone else’s body.

We’ve also experienced incredible compassion – the enormous warmth and sincere interest of friends and family and total strangers who love us. So many have held up our arms. And this series is about holding up yours. Alongside Brett, I’m praying that these posts will be comfort and relief for brave parents of braver kids. Please come. And know that you are not alone.

‘Don’t be afraid,’ he said, ‘for you are very precious to God. Peace! Be encouraged! Be strong!’ Daniel 10:19

Meet Lauren van Zyl and her son Noah [A.D.D., Learning Disabilities & Auditory Perception problems]

Meet Louise Bowley [Asperger’s Syndrome]

Meet Karen Jeynse [Mother of Tim who has Asperger’s Syndrome]

Meet Shaina Cilimberg [Aspergers Disorder]

Meet Sarah Price [Mother of Keller who has been diagnosed with Autism]

Meet Susannah and Monrovia Prinz – [Deaf, from a mom’s perspective]

Meet Kashveera Chanderjith – [Deaf, from a grownup’s perspective]

Meet Rebecca Benn – [Dyslexia]

Meet Steph Mclennan [Mild Ataxia – Cerebral Palsy]

Meet Keith Slabbert [Quadriplegic – Broken neck]

Meet Michelle Botha – [Retinitis Pigmentosa – Degenerative Sight Condition]

Meet Helen Laas – [Soft Tissue Spinal Damage – Car accident]

Meet Lachlan Nicholson [Spastic Cerebral Palsy]

Meet Gabriella Del Fabbro [Spastic Quadriplegic Cerebral Palsy]

Meet Uel Maree [Spinal Cord Injury – Unfortunate Diving Accident]

[If you are someone living with a disability  or a parent of a child with a disability or know someone who might be up to sharing their story, please contact me at brettfish@hotmail.com – have some stunning stories on the way, but always room for more]

By |2017-01-31T13:01:02+00:00September 15th, 2014|pain and Hope, people, Taboo Topics, thorts of other people|20 Comments

About the Author:

Brett Fish is a lover of life, God, tbV [the beautiful Valerie] and owns the world's most famous stuffed dolphin, No_bob (who doesn't bob). He believes that we are all responsible for making the world a significantly better place for everyone.

20 Comments

  1. […] [To read other stories from some incredible people living with different disabilities, click here]  […]

  2. […] [To return to the start of this series, click here] […]

  3. […] [To read other stories from some incredible people living with different disabilities, click here] […]

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

  5. […] 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] […]

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

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

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

  9. […] [For other stories from amazing and ordinary people who happen to have a disability or are faced wit… […]

  10. danarnett October 9, 2014 at 10:58 am - Reply

    This is awesome thank you all for sharing your stories. I feel lead to start a small group in our church for special needs, but I have zero experience, as the leadership group forms this kind of info is going to be so helpful to us.

    • brettfish October 10, 2014 at 1:43 am - Reply

      Thanks for stopping by, Dan. I imagine almost all of the people who shared a story in this series would be up to connecting with you and giving you some thoughts and maybe answering some questions along the way. Drop me an email [brettfish@hotmail.com] if you’d like to be connected.

  11. […] [To read some other stories from people living with disabilities and special needs, click here] […]

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

  13. […] [For more stories of People Living with an assortment of Disabilities or Special Needs, click here] […]

  14. […] There are too many impulses in the brain in one area which results in this dysfunction occurring. The results of this dysfunction means that in a person with Asperger”s syndrome there is heightened sensitivity for the senses. This could be sound, light, touch, taste and smell. This would manifest in the way that if there are too many loud noises the body gets physically exhausted and needs to recover. This is one of the minor impairments. The other ones are that there is a major social impairment (this means that generally most social cues are missed and not stored in the brain) eye contact, body posture and facial expressions look forced. Another is that there is a lack of seeking enjoyment of things with other people and lack of the appropriate social reactions to those of other people. The other set of symptoms are that Asperger’s people generally have obsessions with a few specific topics, inflexibility with rituals that have no purpose, repetitive body movements like hand or finger flapping and a preoccupation with parts of objects. The reason that I am explaining this in so much detail is also in fact a part of been an “Aspie”. Been honest about things in a sometimes inappropriate manner is also one of those traits. I needed to explain all of this first to put my story in context. Aspergers is an “invisible” disorder because you can only see when someone is socially inept when you start to talk to them and then you don’t really want to connect with them because they don’t reciprecate in the conversation as “normal” people would and they constantly go on about one subject. I was only diagnosed with Aspergers about four years ago. When I was growing up in art class and at school all of these traits resulted in me not having many friends at school or even at church. I found it very hard to fit and I also felt very “subjectless” in normal small talk situations as that didn’t interest me much unless they were talking about something that I was interested in. This of course did not happen very often. Sometimes I would also just get angry at people and that of course is a sure fire way to push people away. As a result of this I had few real friends in school and was left out of sleepovers and all the normal stuff that kids do together when growing up. Lack of social skills when the world is a social environment is a huge impairment. I was involved in a ministry a few years back and because I didn’t communicate the message that God gave to some people through me “in the right way” they asked me not to pray for people anymore as I was not socially appropriate. Eventually, I was asked to leave the ministry group because of the behaviour patterns that I had which were not clearly understood by the members of the group. In my normal church environment where “small talk” is a very necessary skill (one which aspies are not that good at and don’t really want to be good at) this a real challenge. I have always found it hard to know what to talk about at church during coffee and to have short conversations that don’t really mean anything. This means that it has been especially hard to form meaningful friendships as they begin with the small talk conversations and very often I don’t really have anything to talk about either. Think of Asperger’s as the person having not been sent the book on “social norms” and ways of doing relationships. Things like when to change the subject from an awkward one, to simple things like it’s time to leave someone’s house because everyone else has left. It has been a struggle for me to make friends because of this impairment and I have to work twice as hard to be included in things because of this. Usually I am not included as my behaviour is classified as strange to the “neuro-typical” type people. I have been bullied and teased and left out of general activities because of the social awkwardness and this has resulted in a very low self-esteem for me with regards to people and specifically to romantic relationships as well as I can’t tell and don’t know the social dance in that either. I was often left out at school and even in my study years. Because of my lack of social understanding this meant that climbing any kind of work “relationship” ladder to get ahead was not possible. I worked in many different sections in many different jobs and usually because I was not good and am not good at expressing my feelings, I didn’t get further in those positions. Stress also affects me badly so that also contributed to things. In the church and work environment I have struggled to connect with people and sometimes I have nothing to say so that means that the relationship doesn’t go further because I am not even sure what I should be saying, small talk bores me and sometimes I can do it, but it’s hard to. I either talk about some contraversial topic that no-one wants to discuss or some random general knowledge on one of my many pet topics. This of course makes it hard to connect when everyone else is pretending and keeping to social norms in conversations! Suffice to say that makes things even more of a challenge. What someone could do is take some time to get to know me for me. The friends that I do have do make an effort but church events that are wider are hard to manage sometimes for me. Where others were always invited out socially, I generally was not (with the exception of my one friend in the church at one time who always made me feel welcome). Weekends away with intimate and close friends never happened because forming those type of relationships is very difficult for me as sometimes I would over share and scare people away and then not share at all. The skill that other people have of knowing the difference between the two, I just don’t have, hence general relationship skills are missing resulting in a lot of heart ache from being left out of events and other things because the relationship was not deep enough and I had no roadmap to know how to get it to that level. One thing about Asperger’s people that is unsettling for the “non-Aspie” is that we tend to be honest about things that in the social norm most people do not appreciate or would not dare talk about. (Eg. salary) Some ways that would help others to make the Asperger’s person feel more welcome (remembering that this is something you can’t really see in “normal”social interactions unless you look carefully or actually ask!) is get to know me for me. You could also find out about my special interests and talk about that and then guide me in the conversation to your special interests. I am naive in some things but that doesn’t mean that I am a child. Patronizing me is not helpful. I do not read non-verbal cues very well and can’t always understand how you are feeling unless you tell me. My maturity can be masked until you get to know me. When rules of engagement (as in social engagement) seem not be understood by us (or me) it would be very helpful for them to be made known very clearly and consistently. Many times I miss the rules of the game that everyone seems to know instinctively. An example would be when its time to leave. A random statement of “I have things to get done tomorrow.” is just that to me – a statement of fact and does not necessarily compute in my mind to “You need to leave now with the other people.” Trust is also hard as I have been hurt many times by people in authority and people on the same level as me. Emotionally I feel things deeply. If you don’t pre-judge me and get to know me, it will be easier for me to believe that I can trust you. My motives are also not clear sometimes and this is where you can ask me and I will be honest with you. (Other NT people you might not ask that question to). Generally speaking most Aspies are also honest about things (even our salaries) and will talk about some topics as a normal course of events (though the “rules” say you can’t) We can also be anxious and that stops us from making eye contact. Answering questions in a literal way is also one of the ways we communicate, so if you ask if someone looks strange and we think so – we will say, “Yes!”. We won’t know if we’ve hurt you so you need to tell us if this is the case. Sometimes we also don’t know when we are invading your personal space, so again also tell us if this is the case (as we won’t have any idea unless you do!) If you just move away from us and we don’t why, it would be helpful to explain why. It’s also easier if you explain the detail first and then the big picture in a logical way, some abstract ideas are difficult to grasp some of the time. Please also don’t use social constructs in an explanation but rather define something in a logical and factual way. I also verify and clarify things often (it may seem redundant) but it helps me to understand and it helps the person I am speaking to understand as well. Interpreting someone’s intent is also very hard to do. Understanding is also key as we are all different – so trying to understand where I’m coming from and me trying to understand you will also go a long way in bridging the gap. Calling people by names like someone being “difficult” or “retarded” is not very helpful (no-one likes being labeled no matter who they are). This will cause anxiety and when we/ I get anxious this would make it more difficult to communicate. Freedom for everyone to be themselves without judgement is a very important thing and I find that even people in the church are quick to judge and make an excuse to leave someone out of their special group. This needs to change as we are all a part of a family no matter what the people in the family look like. We are all different and just because someone’s behaviour is different does not mean they are less of God’s creation. So I encourage you, if someone looks like they are struggling in a social situation and look alone, go up to them and start a conversation, you never know, your life could change! [For other stories from inspirational people who happen to be living with disabilities or have speci… […]

  15. […] found the series i ran on the Taboo Topics section on my blog on Living with Disabilities to be super helpful in this regard. My friend, Louise, who has Asperger’s [which i always had […]

  16. […] of my blog i invited a group of friends to share some stories they are living with regards to disability. This week i was asked if i could share this post highlighting some of what has been taking place […]

  17. […] stories people wrote about Taboo Topics [rarely spoken about topics such as Mixed Race Couples, Living with Disability/Special Needs, Vegetarianism and […]

  18. […] [For other stories of people living with special needs or challenges, click here] […]

  19. […] [For other stories of people living with Special Needs or Disabilities, click here] […]

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