DISCOVERING ME - A PERSONAL UNDERSTANDING AND DISOVERY OF WHAT IT MEANS TO HAVE ASPERGERS
(A book of poems and other musings – Version 2.0 Dated 2012-08-20) By Emma Jane
To those that have read my first book of poems dealing with my personal journey into understanding of what it means to have Aspergers. I hope you will like these poems too. You may notice that some of the poems are similar in theme to others I have written, only from a different angle or the issue was only fleetingly mentioned before. The reason I have included them, is this. Aspergers is a very complex experience for me. Ask any who has it, I am sure they will respond the same. Which in turn also makes me more complex to others in return. No one fully understanding who I am. But I too, in many respects am still figuring out what is and is not related to my condition and how it is affecting me in what way. And I wish to let others see this and some of my very deep thoughts that in some ways I cannot say face to face even to my loving parents. Knowing some of it may hurt them. It may make them feel guilty at not been able to do more. Even though they went beyond what most would have done and more. So under another name I can let it all out, with no one knowing it is me. At the same time feelings I have wondered if I wanted to face again, when there was no need to. I am not hiding from it but, the memories still hurt with thinking of some of the things. Though I have tried to not let it define me. I am me, and I just happen to have Aspergers. In some ways I think have gotten it right and in others, lets just say it is a work in progress. But if it helps another it will be worth it. To those who have not read the first book of poems. Do so, it is also free to download. Between this and that book you will have a better understanding. But remember each person who has this is not exactly the same as another. Thats what makes it so hard to pin point this condition as well. I can only give you my version as I see it. But another may disagree that some of it describes their version. A lot I have taken to be normal. No matter how strange things have gotten. Only now do I realise they are not the way they should be. Now finding the words I am putting them to paper, in the hopes it may help others find their answers and open they eyes of others. Aspergers is a real condition, apart of the Autism spectrum and not one's imagination as some seem to think. Even by some misguided professionals and there are many out there. It cannot be cured, but we can learn to survive society in our own way. Sometimes we can fool you into thinking we are just like you. But other times you know we are not. Gain an education. Before you may have to learn it the hard way. For the figures for those affected by this is growing. You are at a higher risk of having a child with it than when your parents had you. But even if you don't, you will have hopefully learned to accept that not everyone is like you. That many think differently from you and even me. Who knows you may come realise that you may be one of us too.
A Bad day to be a bully A Flash of brilliance A Note to professionals A Very different student Hermione's bottomless bag An Embarrassing situation Dealing with smells Blinkers Box A or B Cannot find the words Denial Cleaning House Do not limit me Do you know you are disabled? Finding Work Fragile Writings Acceptance Friends I just am Having a positive attitude I don't want to play tennis I am not disabled I am a girl Ignored Living in between Just because I don't like it Look at me Make-up Mountains or mole hills? Move faster Recognition Recognition – Part 2 – The experiment Shopping for clothes The Relevance of time Sorry we can't help you Spelling Stressed Stuck in time The Baptism The Alien The Car ride The Pressure cooker The Conversation The Shattered Mirror The Food minefield The Little girl inside The Lesson of the roller skates The 'Tantrum' The Unquiet mind The Terror of responsibility The Troublesome toothbrush Tintin the movie
Tired What on earth is going on? What's in a name Where have all the good doctors gone? Where is my script? Wonderings of what will be The Ringing doorbell syndrome
A BAD DAY TO BE A BULLY
When people try to step on my toes I do my best to avoid it But there is just so many times that I can sidestep Then when this little twig decides to snap Oh beware! They taunted me Calling me names The one the liked the most was Granny Just because I got glasses in Sub B As the years went by they didn't stop I already wasn't a social butterfly This just made it worse But one day In about standard 3 I had had enough A Filipino boy in my class He got the fright of his life When he started Instead of just 'taking it' I lifted him by his shirt off the ground He was at least a head shorter than me His eyes grew wide I told him if he tried that again he would be sorry In the meanest voice I could He was so in shock he didn't try to resist I had never reacted this way before Then I calmly and gently deposited him on the ground And turned to leave To my shock The principal our small school Was only a few meters away watching He said nothing But later he did not punish me either for reacting with violence I guess he knew I wouldn't really follow through I normally shyed away from that kind of behavior Yet I had made my point After that no one bothered me in primary school
A FLASH OF BRILLIANCE
That's beautiful Or That is really good A flash of brilliance They say Why do you hide your talent? Not use them to make a living out of it Or at least aid you along the way But that is where the problem lies A flash of brilliance A flash is all it is Only here for a moment Then it is gone Unable to permanently harness its power It comes and goes in waves Most times with very long periods in between Any pressure to perform And it doesn't come at all Skills learned quickly by others Sometimes comes slowly Many times in random bits It's like putting a jigsaw puzzle together at times And when enough comes together at the right time People seem to think you know a lot more than you are letting on Not realising there are huge gaps in your skills Or understanding of a subject You just happen to know that bit Or what to do in that exact situation But not a similar one And the panic that comes When people expect you to be able to do this all the time Not always understanding that you cannot
A NOTE TO PROFESSIONALS
Getting a diagnosis Does not mean the end of my world Getting a diagnosis Does not mean I will give up on life Getting a diagnosis Does not mean I will use it as an excuse to do nothing Getting a diagnosis Does not mean I will expect everyone to wait hand and foot on me Getting a diagnosis Does not mean I will live my life recklessly And blame it on my condition Getting a diagnosis Means things make more sense Understanding why you do the things you do Getting a diagnosis Means I can get help when I need it Getting a diagnosis Means I can learn to work around the problem where possible Remember if you don't acknowledge that there is a problem, how can you deal with it? Getting a diagnosis Means people are more understanding if I struggle with something Getting a diagnosis Means I can be free to be me And not have to pretend I am something I am not Getting a diagnosis Means I can make informed decisions in my life On what I can and should do Without it things could go badly SO WHY THE HECK ARE YOU PEOPLE SO RELUCTANT TO GIVE ME ONE? You are here to help Not hurt You took an oath remember?
A VERY DIFFERENT STUDENT
We want you to be a Primary Teacher They say For kids with special needs When you are give a calling There is only one answer YES! Though at times it can be a huge leap of faith when doing so Most have little or no idea of how to do their calling when they start You are luckier than most this time You know how to teach little ones You did it for a number of years You know what Autism is How in some ways it can affect a child You have it too Just not as badly So, much studying has been done The week before your first lesson Many questions are asked So you can best prepare for your class of one Though you know it will take time to get things right Every child with Autism is different The next week comes around quickly The 'little' boy is there In class he cannot sit still for very long He is looking at everything in his hyper active way When he does sit for a moment He plays with the little plastic disks Not putting them in the tin But rubbing them over each other on the floor Enjoying the noise they make Any interruptions From others opening the door Upset him greatly Then all he wants is out You know this problem has to be solved Or this class will never work As the lesson time continues You watch as he tries to make sense of this new world he is in You feel the spirit whisper too you This child is special And despite his screeches and screams of upset or wanting to go where he cannot You do not feel the rise any panic or loss of control That a normal child would have you feeling Things are strangely calm You feel the spirit whisper
Everything will be ok Also knowing it will take time For him to get to know you And you to know him
HERMIONE'S BOTTOMLESS BAG
Ever watched one of the last Harry Potter Movies? Even better read the book? You will know of Hermione's bottomless bag You can put as much as you want into it It will never get full The mother of someone I know By the way she reacts Seems to think I have one too For whenever she sees me Whether I have come for class Or just to visit The look of disbelief and wonder on her face For whatever I need comes out of my bag. And some of my items are not exactly small But even though I may wish I had such a bag I do not But the secret is this Plan for what you know you will need Plan for what you think you will need And then some For each and every outing Then pack most carefully If you don't know how Learn to play Tetris So if you want a bag like Hermione's Or at least the allusion of one Plan, plan, plan And plan some more!
AN EMBARRASSING SITUATION
A while ago my great uncle died My Dad, brother and me were able to do But not my Mom The funeral was at such short notice Two days after he died Only to be told late the night before about it We were expecting it to be at least a week Took my nausea pills for the long trip Two or so hours later we arrive Thankfully not too much worse for wear Once there did I only realise How much I rely on my mother to unknowingly help me Though such and other family affairs My great uncle's sons greeted us at the church gates Took me a while to figure out which one was which Then a lady greeted me in side by the gate I greeted politely and carried on Much to my embarrassment To hear my Dad greet her by name She was my Aunt! One of the wives of my uncles I had greeted outside! The look that she gave me When I came back to apologise Even after trying to explain About my problem with faces Now a bit dazed and shocked at my blunder I continue on And nearly did it again This time with the daughter of that same uncle! Thankfully my dad saved me from this one By greeting her first The only reason I didn't do it again at the door of the church With the daughter of the other uncle She was the only curly redhead girl I knew! It is sometimes much less stressful to be in a room full of strangers Trying to make small talk Than be by oneself at a large family gathering Where not recognising faces Or remembering names Doesn't leave you with egg on your face
DEALING WITH SMELLS
It can be a challenge with things that affect ones nose Spray cans are not good Deodorants and hairspray They leave me coughing and spluttering at first Then sneezing and a runny nose for a good few minutes So no hairspray for me Roll on for deodorants will have to do But whatever you do Do not use cologne Or perfume My nose does not need to run a marathon Step into my world and experience a few more smells my way Where certain smells do not leave me feeling too good To the point I feel like I want to get sick The only way to prevent that Is to get away as fast as possible Then take time for my system to recover Here are just a few things that get to me Some quite badly Others a little less Never the less none are pleasant to me Coffee Lavender Cigarette Smoke Sunbaked Black rubber Or soft plastics, especially black or green Alcohol Like warm champagne Where smell of rotten grapes is most overpowering Which leaves me wondering even more Why do people want to drink rotten grape juice in the first place? So what can one do? For me the answer is this Don't use those products that affect you Or go near the things causing the smells where possible Which can be good for ones health When looking at this short list But if you have to be near it or use it Do it quickly and be gone The best smells for me are the natural smells of things So for me fresh air is best Use things that are fragrance free or that are not too sharp in that regard Which can be difficult at times when it seems everyone wants the things I cannot stand.
All your life you have had blinkers on Only seeing some of the world Only what is right before you You cannot see the rest of the world But you do not know you have them on When you do notice something is off You are told by others that you are imagining things Stop trying to get out of things Or looking for ghosts that are not there Even the professionals refuse to see you have them on Then again they too have blinkers on If it doesn't fit their little neat boxes it doesn't exist Only looking in one direction Ignoring anything along the way But those blinkers are beginning to chafe They cannot deny that you have them You can tell they are there But they keep trying Then one day You come across what someone has written Your blinkers begin to come loose The more you read The looser they get And when you really get it They are now gone Some still try to deny it But free of the blinkers You know who you are You understand things better You now have a voice And no matter what others say They cannot take that away.
(For those who do not know what Blinkers are. The are used on donkeys and horses, a covering for their eyes, that only allows them to see what is strait infront of them and nothing else.) 8
BOX A OR B
A test is placed before your Multiple Choice This one is about How you would do things How you see things And how one would react Your heart drops to your toes You read the first question Are they wanting answers C or D? If they tell you the reason for the question You will be able to answer it You are told to stop over analysing it Just answer the question But how? You don't know what they want! The dread grow within you with every question you read You do your best to soldier on You try another question It is about what you think you are like Great there are 4 boxes as usual But there is no box for you You are told you must choose the one nearest to what you are like How? You fall between answers A and D They look at you in exasperation Stop taking so long Just answer the questions It is not that hard But how am I supposed to answer such questions correctly? Not given the correct information or reason for the question How do you choose an answer when not provided the means to choose it? I hate these kind of tests. I can never find the box that fits!!!!
CANNOT FIND THE WORDS
Over the years strange things physically have happened to me But when asked Why did you not say something? One could only answer one way How? How do you say what you don't understand Or know what words to use Especially when younger Then when you thought you found some words Only to be find it was not what others used Was told at times You're imagining things Get over it Or if by chance you got them to understand in some way They didn't believe it was as bad or as restricting As you made it out to be I have now slowly begun to learn the words others use for my experiences But when it's happening All words go out the window I am just trying to fight it's effects Trying not to loose what control I have
Why do people not want to face the reality of the situation? Rather live in denial Stick their heads in the sand Struggling through it on their own Instead of facing it No matter how scary it may seem to be Taking one step at a time Bringing light to the subject Talking to others that are or have gone through the same Sharing the load Instead they are blundering in the dark Doing more harm than good To themselves and to others 10
I know I've got to clean the house But the urge is just not there Would rather do something else It is the last thing I feel like doing But I know when the urge hits It will be a couple of hours later Before I stop exhausted Like all my urges to do something Many happen at the weirdest times Like writing this poem at 1:15 in the morning After Cleaning for an hour Having to force myself to stop Then I started writing this But I have to now will myself to sleep Or tomorrow I will be grumpy Even now I know I will feel the effects of this night two days later the most I may be a night owl It is when energy is quite high sometimes But without enough sleep One can get a bit cranky Thankfully I am on holiday at the moment Allowing me the privilege of sleeping in
DO NOT LIMIT ME
Many who hear what you have Try to hem you in Most do not realise that they do Limiting your options But I will not let this be Not accepting that you say I can't I know I am limited in certain ways But that doesn't mean I won't try It is my choice of which battles I wish to face Not yours There will be times When I kick and push against these barriers that I have Do not stop me Help me instead 11
DO YOU KNOW YOU ARE DISABLED?
People have asked If I miss not been like others But I was born this way How can mourn for something I have never had? True at times, I wish could do some of the things others can do But don't we all wish we could do something amazing that you have seen done by others? So how to I explain this to you? Well here goes.... If all the people in the world had four arms And you only two You would be aware at times you are different But would you see yourself as disabled? Do you really know what it means to have four arms? Not really You can just imagine You take note what others can do They do some things with ease Where you would struggle with it Like closing a over stuffed suitcase By holding the case closed with one set of hands And using their other set to close the latches Tying that a annoying parcel By holding the string with one set of hands Then tying it closed using their other set of hands They can carry many more things in their hands When moving small things They can move double the amount you can when doing so They can also do things faster than you An advantage of having an extra set of hands Many who have four arms Would either look down on you Or have pity on you As you only have two arms Some even ignoring the fact Life may not have given you four arms But you have learned to adapt The over stuffed suitcase? You sit on it Then close the latches 12
The parcel? Use packaging tape As for carrying lots of things You would use a box or bag To move the same amount of items So when it comes to doing things You may be a bit slower than others As you can only do it at half the speed But you persevere Knowing in the end you will get it done Though at times you may need to ask for help along the way You have grown up seeing this way of life as normal As no one made a big fuss about you only having two arms Instead of four So for the most part Unless someone points out that you do things differently Or you realise that you struggle with something others do not You do not realise things are supposed to be different
Looking for work Finding it hard No maths No science No car license Only bike Frustrated Want to improve my lot Unable to do the things now mandatory Most jobs that don't need this 200 or more people ahead of you wanting it Pay is much less than cost of food and rent per month Also hard on my sensory and social issues Lucky to work for parents For now But what happens when they retire? Want to work Don't want hand outs 13
People think writing is easy For me it is not Takes hours of daydreaming Thinking it through Hours of writing it down As I let the ideas take me where they want to go There must be no pressure to produce It's the quickest way to go dry Ideas only come When there is no time constraints Or on what I have to write When I get started do not interrupt When starting once more At times it can change the direction of the story completely Or it may never get off the ground Taking months or years if lucky to get going again For me writing is like a delicate flower It only blooms when the conditions are just right
It seems that acceptance Comes easy for some Harder for others In some cases It can be those around Those who are struggling Who cannot accept Not the person dealing with the issue They who have embraced it So the tables are turned Those who would normally be their support Being patient with them as they deal with things Now need the support and patience To accept that this is the way life is For a loved one or friend Mourn the hopes and dreams they once had for them To work through things as they are now And what they could be 14
People may think I have lots of friends Not so I am friendly to all But that is all Besides my family There is only one Yet even then for me It still feels forced I see in others Their joy of friendship with others For me the connection is not there No matter how I try Others make it look easy Yet not for me It feels like I am trying ever so hard By the end I am drained Because I am friendly by nature Helpful too Therefore many may think I have tons Yet I am standing in a crowded room alone
I AM A GIRL
I am a girl That part is true But not the kind of girl most people expect I am not into fashion I hate frilly things I do not paint my nails I hate the colour pink I lean more towards what boys like But not too much I think I like to ride a scrambler And learn to survive in the bush I like my Blue Jeans Dresses are not for me So needless to say I do not fit the mold Although it has taken time I have accepted who I am I am a girl who likes to do things a little differently
HAVING A POSITIVE ATTITUDE
How is it that you are always happy? They ask Despite what you have faced Despite knowing what you will still face Or what you may face in the future? My answer is simply this Besides my inner strength and faith that comes from Heavenly Father I was blessed with parents who raised me well While many would wallow in sadness At knowing something was wrong Though no one had answers for them They did not As I grew older they passed this knowledge on to me Some of it by words and other by deeds Focus on what you can do Work as best you can at what you struggle with If you can't get it right like others can Work out a different way of doing it If that doesn't work Work around the problem Never give up You can do it I am not super human I do have my off days But the love of ones parents And with my faith in Heavenly Father I know I will get there Being happy is a beautiful gift But it is also a choice Seeing the joy in life Despite what may ale you We all in our lives have challenges Just some are bigger than others Though at times it may take a while longer to get to where we need and want to go But if you face the journey of life with a happy heart It will make the journey more pleasant and seemingly less long!
I DON'T WANT TO PLAY TENNIS
Organise yourselves a tennis racket The teacher says Next week you are play tennis for PT But I don't want to play tennis I am hopeless at it The look of disdain the teacher gives You have no choice The day comes You look at the 3 courts tiered on the slope This is the last thing you wanted to do But the teacher is insistent Nomatter how you try to tell you cannot You look at your racket It is made of wood It is way older than you Everyone else is made of carbon fibre Yours your parents most likely used at school But why waste money in getting a new one? This is a waste of time anyway Your are instructed to enter You are in court no. 1 at the top of the tier Your anxiety grows You know what is coming Your opponent hits the ball to you You manage to hit it Surprised that it stayed on the court Though it didn't go where you were hoping The first serve you do goes bad widely But stays close to the ground The next serve goes over the high fence that surrounds you You hear a shout of pain Your ball has hit someone on the head in the next court You try again This time you nearly hit your opponent in the face with the ball It went strait for her It didn't even bounce You try once more It goes high again Wedging itself right at the top of the fence in the corner Where no one can get it After this thankfully the teacher swaps you out with another player 17
But the look she gives She is less than pleased She seems to think you are doing this on purpose But in reality the experience was humiliating Been made to look like a fool Thankfully we do not have too many PT sessions doing this She seemed to find that everyone was not liking it as much as she thought they would Most getting restless having to wait their turn to play Eventually we went back to do swimming for PT in summer And using the Hall or courtyard if it was too cold But even now all these years later I still don't like tennis I still can't hit the ball most times where I want it to go
I AM NOT DISABLED
I am not disabled No more than if I was a foreigner in this land Like them I do not fully understand your culture Mine is different to yours Despite all my years of been here I still do not fully get it True many of my counter parts Do need special help from time to time And perhaps even me one day But a lot of it is because of other issues Many brought on by your culture Who can't seem to accept That not everyone fits into your neat little boxes As the years have passed I have noticed This has gotten worse Not only for someone like me But any who do not fit the mold To not accept those who do not think like you Your culture is doomed to die For all the forward thinkers Nomatter the culture All thought out of the box Isn't it about time you did too? 18
I JUST AM
Some have asked questions about myself Many I cannot answer No matter how I try Like asking how I do things Or overcome problems Er... Which specific problem? Which specific incident? Your question is too general You are causing me to freeze in indecision Overloading my brain Too many things all running around in there at the same time Now no answers will come When it come to questions about emotions I know I have them I feel them But their names sometimes elude me Or the words to say to another Unable to describe them Even if you ask specific questions That just require me to say yes or no I just am Interacting with people On the surface seems fine But look closer Things are not The way I react The way I do things But I do not realise many a times Only when others say something Or give me a look I do know I have done something wrong I have done something weird I just am Even when you try to ask your question More directly More clearly Even then many of the questions you ask still baffle me I cannot find the words I don't know why I react or do it that way I just am 19
We are standing in a group I am standing right next to you You respond to what others say But when I say something You carry on as if I had not Do I have a superpower? To be invisible? Talk above what others can hear normally? No, I think not For crying out loud I am the same age as you Yet you react to me like I was a child To be ignored Who's opinion about this matter does not matter Like I am not even here I am not invisible I have a voice I do matter So why do react as if I don't?
LIVING IN BETWEEN
I am an adult in body But a more of a child in spirit Never fully fitting in either world I am living in between My condition is also an irritation at times I am not debilitated by it enough to need special care But I am not free of it enough to live without it causing challenges from time to time I am living in between The worst for me Is others do not see it When they need to Most do not understand I may look fine Yet I do not always react like them Though they expect me to be like them But within I am struggling at times I am living in between 20
JUST BECAUSE I DON'T LIKE IT
There are many things I do not like Or feel comfortable in doing That most do without thinking about it That to them is just the way it should be Just because I don't like it It doesn't mean I won't try some of it From time to time But not when pushed Encouragement is welcomed But not by force Let me set the pace For me the time you want me to do it in Is just not right to me But if gently encouraged along the way This delicate flower that stands before you Will begin to bloom The wonders you will see So just because I don't like it Do not give up on me But learn a different way of seeing Of what my world could be
LOOK AT ME
Look at me when I am talking to you How many times in the past have you heard that? For me I have found a way to look without really looking I will look at your face But not at your eyes It makes me feel uncomfortable I will look if I have to But when I don't It is your mouth and nose I focus on Other times I do not focus my vision So your face is sightly blurred Or I only give quick glances As we talk Continuing to work on what I am busy with 21
You don't like make-up? They look at you in disbelief All girls like make-up Not so Not me Whenever I have put it on All I want to do is scratch Many have said You may be allergic Use allergy free products It still didn't work I still wanted to scratch I even have this kind of problem with other products like Sun Block Admittedly not too much scratching As most of it is absorbed by the skin But I can still feel whats left of it on the surface of my skin Even hours later A sensation I do not like Because of this I would rather In the middle of summer If outside where I will get burnt Wear long clothes and a wide brimmed hat Rather than putting on the Sun Block If I can help it And believe me this place can get hot So when it comes to make-up and other such things But especially make-up Keep that stuff as far away from me And look for another victim you wish to make over!
MOUNTAINS OR MOLE HILLS?
Ever hear the saying. Don't make a mountain out of a mole hill. Meaning it is not that bad So don't make it sound so But the problem for me is What you see as a mole hill Is a mountain for me No I am not over reacting This is how my life is What is easy for you to deal with Is not for me I have to learned to climb everyone of those mountains Or figure a way round But it takes time and patience Rushing me Or telling me to get over it Is the worst thing you can do So just remember this So what you see as a speed bump On your lovely tarred road of life For me there is no road I have to hack my way through to my destination Creating a pass though the mountains While avoiding the dangers lurking in the jungle
Move faster I hear the teacher say You are doing the moves too slow Don't think about it just do it I have come to realise To everyone else I may look like I am moving at normal speed But I am already moving faster It has taken lots of practice not to mess up Hours and hours If I try and go faster now I will mess up Subconsciously my brain is working overtime Making sure everything moves in the correct order at the correct time And when it is a sequence of moves Like when doing martial arts I have to think most times before doing When practicing So hopefully I may react more without thinking when the day comes I need to use it So whether to learn a new dance move Which I have tried and it is not for me or doing martial arts Which I really enjoy I have to teach myself which muscles move when Which takes time And not like you Where you just move
You remember most faces like this
I remember most faces like this People just don't get it They laugh it off Saying they too forget faces from time to time That too comes with age Er.. Hello I am in my 30's You bristle with frustration They are not listening You have had this problem all you life You cannot remember the faces many a time Just a few minutes to a day later after meeting Yet you spoke to them for at least half an hour Even those you have known for years you do not recognise Just because they are not where you normally meet them Or they have changed something with their appearance Even in small measures this can throw one into turmoil 25
You are constantly playing detective Trying to figure out who is before you By their style of dress What they say Or how they move And where you meet them You have learned tricks to hide the fact That you do not recognise them I have learned to greet people without using their names I have learned to get people's attention without using their names If I know have have to speak to them later once more that day I take careful note of their clothing Or get others to find them for you and get them to come to you In group settings I stick to someone like glue Usually a family member Let them break the ice with others Thereby helping you figure out is is who Without either of them knowing it Listening to the conversation for clues I may have perfected these tricks over time But they are not fool proof It can be quite embarrassing when you slip up The looks you get from others For not recognising them Rangers from confusion to disgust And trying to explain doesn't always help.
RECOGNITION – PART 2 – THE EXPERIMENT
Prosopagnosia (Face Blindness) IS NO JOKE! It is far more serious than many seem to realise Since so many just don't get it We shall do an experiment Ask a friend to gather 20 random people you know From anywhere Church, work or friends you know well Even someone you know from the shop you go regularly to Their choice You are not allowed to meet them till later Once they all have been gathered Have them all put on the exact same ski masks Making sure that their heads are completely covered Including their hair Now you may enter the room where they are You must identify each person One by one Without them telling you their names Either by the way they dress Sound Move Or what they say No obvious hints may be given Not so easy is it? Welcome to my world I live like this 24/7 This is how I see most people to some degree So give a thought Before you brush someone off When they say they have a problem Just because it doesn't sound or appear to be that bad As they say it is Doesn't mean it isn't You may only be seeing what they could not cope with Or hide about their condition And definitely not the tremendous strain it puts them under to keep it up
SHOPPING FOR CLOTHES
A mystery has always been around shopping for clothes Why is it while others find what they want within minutes While for me it can take months just to find one item? And its not for the lack of trying How do they do it? Is it because I am between sizes? Between clothing for normal and larger people? A Girl, but need hardy clothing not flimsy office wear? The wrong shape? Too modest for the ever shrinking or see through clothes? Issues with my sensory problems? Or is it the simple problem of sizing? These are the questions I have to ask Is it made in China? Is it made in South Africa? If so, was it a South African or Chinese pattern that was used? Or was is it made in America? Why ask which country? Here is the answer China – at least 2 sizes too small, sometimes more South African – the size they should be American – about 2 sizes too big When it comes to shoes We shall not go there That is another whole story on it's own. If someone knows the secret to finding clothes Please let me know!
THE RELEVANCE OF TIME
On the surface I understand time What an hour is A day or a Year But in reality when experiencing it Things can be very different Many times loosing track of it Yet other times I am a slave to it 28
SORRY WE CAN'T HELP YOU
You have a happy and healthy child But of late you notice something is off At first you instincts as a parent lets you know Then you worst fears are now seen Your child has changed in subtle ways Your child seems more distant Doesn't like to be touched as much The fear grips you inside Your child has been abused This cannot be! You begin to look for suspects But you find none If your child has not been abused Why is your child reacting this way? Expert after Expert You get the same results They shrug their shoulders Sorry we can't help you Now what do you do? There is something happening to your child But what? You take each challenge as it comes It is trial and error You pray a lot Which really helps As the years go by You try some more experts But their answer is the same Sorry we can't help you Years later You get the answer Your child is fully grown The reason why the experts didn't see They were looking for it in its severest form Your child was way too mild to be considered Besides all the markers were for boys Your daughter did not fit So to all those parents out there Facing this Have your child tested for Autism But make sure the expert believes in the spectrum That milder forms are a condition too 29
But even then Unless necessary do not let your child feel different Only approach their challenges differently Help them do the same When I did something differently All my parents would say You thought out of the box Saying it was good to do so But if you still get the same answer from experts Sorry we can't help you Try another Unfortunately when you don't have something well known Or it is mistakenly not accepted as a condition at the time Even now many think Aspergers is not a condition But it is Don't give up Things tend to take time But in the meantime Help your child the best you can With what you do know And most of all Let them know they are loved Mine did It is the best thing they ever did
My spelling is up the creek I know But it has always been this way First they thought I just need glasses in Sub A But my spelling didn't improve They tested me for dyslexia They said I did not have it But as the years passed Things did not improve In High School, I received my worst punishment Almost 3 months Detention nearly every day Even after telling the teacher that I couldn't spell She didn't seem to care She seemed to think that punishment would put me right Thankfully she gave up in the end Sanding desks I didn't mind But the legacy she left behind Is still painful now By punishing me for something I had no control over The message she had sent You are not good enough But what made it worse Besides been my Xhosa teacher Language number 3 She was the school guidance teacher too So when when people criticise my spelling or correct it while I'm standing there Though I know they are only trying to be helpful But thanks to that teacher It causes my blood to boil But I do not mind if you correct it away from me Then give me the corrected works later The years have passed I now believe I now know why my spelling is so bad I do have dyslexia Just not the kind most people seem to have The word on this page looks right But a few pages later it looks wrong But because no one realise that I had Aspergers Which made things hard to explain of what I was experiencing It got overlooked Besides how can a 7 year old who was just starting to learn to read Know that this was not the way things were supposed to be?
Many find different ways of coping with stressful situations When things happen all at the same time Or things go badly or even slightly wrong Mine many a times is to pull into myself Most at first do not realise it is happening I don't start to rock or hum to myself I just become very still Those who do notice May think I am distracted by something around me But in reality Things are very different I am fighting the rising panic I am fighting the urge to curl into a ball By brain is running a mile a minute But is frozen at the same time Trying to figure things out Eventually I start to be able to slow my thoughts enough to think Blundering through the situation My body isn't responding as quickly as it should Yet somehow most times Thankfully making it through without any major hiccups Yet leaving me drained by the experience Admittedly at times the opposite happens I become agitated By the experience Especially if I have experienced the same situation a number of times I have some idea of what I must do But it is still not easy I do not cope very well with such situations to begin with Multi-tasking is not my strong point Many may think I do it well But in reality it is not so It takes a while to figure out how to do more than one thing at a time Like cooking different foods at the same time So they are ready together It takes practice and routine Like following a recipe Mess up my order or timing of things and the panic begins
STUCK IN TIME
When you look at me I look like you But I am not Emotionally, I am much younger When my youngest cousins were born I was older than them When they were about to become teenagers I was equal to them Now they have left school I am younger than them Forever stuck in time Barely moving at all Intellectually I am able to learn with the best of them If given time and using the correct methods for me And it is my passion Emotionally It is not the case Which leaves me with a dilemma I am a child Yet I am not Forever trying to pretend I am an adult Those who were much younger than me Are now adults Doing adult things Yet all I can do most of the time Is watch as time goes by For I am not ready for some of that yet How long will it be till I do? Or find someone who will take me as I am I do not know But for now I am stuck in time Barely moving at all
You are excited Today's the day You've waited a whole year longer than most But you day has come You arrive at church You begin to have that familiar feeling Things look and feel funny It is not as bad as it sometimes can get You do your best to ignore it But it is not always that easy Thankfully it is not getting worse An old lady you know The family has known her for years Gives you a present to celebrate this day A Finely decorated white chocolate rabbit She says something about it But you didn't get it all The thing that is happening Makes you not hear it all You were busy fighting its effects Distracting you But you suspect She only wants you to eat the chocolate rabbit after your baptism Not before As the time gets closer for the big event You go to change your clothes The funny feeling is almost all gone You are now almost fully able to give all your attention To why you are here You walk to the edge of the font You feel like yourself once more The excitement and happiness builds As you begin to walk down the steps To the Priesthood holder who is to baptise you He takes your hand Shows you what you need to do Settles your nerves Telling you it will be ok He will not let go of you He says the baptismal prayer Then dunks you under 34
Then pulls you back up He gives you a smile You are hit with the most wonderful feeling That others told you would happen The warmest glow in your chest You get out of the water Go and get changed Then come sit on a chair Specially put aside for you They lay their hands on you The feeling in your chest gets stronger Then the strange feeling you do not understand returns Hits you full force as you get off of the chair. Much stronger than earlier on Everyone is coming to congratulate But you are feeling completely dazed Especially since both feelings are hitting you at the same time Not knowing how or what to do But as usual doing your best to push on Nibbling on your white chocolate rabbit
Interacting in a world that is not your own Doing your best to hide the fact Struggling at times to understand how those in it interact with each other Or why they do certain things Especially when there seems to be no meaning to it Doing your best to avoid situations Doing your best not to offend Though at times you have no understanding why they are offended What you think is funny They do not What you think is normal They think is weird When you do something that really upset or annoys them They ask or give you the look “What planet are you from?” A answer you cannot give All you know it is definitely not this one 35
THE CAR RIDE
I hate riding in the car Especially long distances Have always felt this way Most of the time Trying to sleep as much Including being next to the closed window Can wedge my pillow in for a comfortable sleep Or so I can open it in a hurry Eating dry biscuits and peppermints helps as well But most of the time I feel half comatose Due to not feeling so well When I get out of the car for a break I feel unsteady on my feet I also feel extremely weak Been green around the gills is not my idea of fun Taking something for it before I go Sometimes helps a little But it never goes away
THE PRESSURE COOKER
Your life has been like a pressure cooker And over time It has gotten worse People expecting you to be like them People expecting you to be able do certain things Especially at their pace Not yours Trying to hide the fact you cannot Not understand why you are the way you are But when you do Oh! What a relief The pressure that was building Has now been released The guilt and blame is no more You can now say No Not feeling like you are doing wrong Or that you have failed at life somehow Things just move at a different pace for you You will get there when the time is right for you
Conversations Most do it with ease Not me Sometimes I sound and look like a chatterbox But I am not Normally over things I know or like a lot Then I run out of things to say Repeating things Or not saying anything at all Talking on the net is better Not Skyping But Typing Conversations drawn out longer Gives time to think on how to respond Gives time to think of new topics to talk about Unlike speaking face to face Where I am left speechless after a short while Not knowing how to respond in time But in the end The conversation there too runs out Leaving one hoping and praying The other person says something Sparking another topic of conversation One I can relate to
THE SHATTERED MIRROR
You see the reflection of the world in all its glory in your mirror I see it in my shattered pieces as it lies upon the floor I only get to see fragments of what the world is really like Each shard reflecting a portion of what is Finding which piece goes where Trying to place all the fragments together To try and get a better picture But even if I find all the pieces The view of what I see is still fragmented. And of what you see of me reflecting back at you
THE FOOD MINEFIELD
I watch as people eat They seem to be thoroughly enjoying it Nomatter what is put before them But not me When eating out Especially when visiting This can be like trying to negotiate a minefield For me the problems is this Besides the Word of Wisdom The religious laws I obey Which means No Coffee No Tea No alcohol To be consumed Which most seem to accept and do their best to accommodate Then I have my sensory issues This is the bed bug I begin to tick off my check list in my head As I look at the food before me Which ones will I choose Knowing at least one of these items is most likely to be in it Mince Meat Mushrooms Rice Onions Especially when raw Spices Like curries This includes pepper Most seem to loose the pepper pot in the food these days But salt is ok Another bane Chillies The latest fad is to put it into everything Which you can guess by now kind of cuts down on what foods I can eat even more And if you ever came to my house to eat Things for you can get rather bland Most stuff there is either eaten Raw Steamed Baked Or Boiled
THE LITTLE GIRL INSIDE
From the outside I look like everyone else But inside I am not as old as I look My emotional age is much younger But I have been able to an extent hide it from others It is far from easy Sometimes taking much effort But it has also become a way of life To protect myself from others not understanding To the point now Difficult to find some of those parts that I have hid Taking time now to unearth At 15 going on 16 I still played with my dolls Played with my Lego and Playmobile But I began to see that the other girls no longer did When they noticed They would give a look of “what's wrong with you?” Then I went through a very stressful part of my life Trying to keep up in school Pretending more to be like the others The stress of it all Playing with my toys had helped till then to de-stress But because of the way others reacted I no longer did it openly unless at home But the pressure was beginning to build At one point I thought this was going to be too much Then one day I found a way To release the pressure To still play without anyone seeing By going inside My imagination became my playground I can do it for hours on end But had no way of knowing how to express it to others What I was thinking in there Words to express is not my strong point Only years later I began to find a way to put it to paper But at first it didn't feel comfortable in doing so Then frustrated I couldn't get everything down Even now so much is still running round this head of mine So much I am still unable to express Even though the number pages of what I can has grown But there are so many different sides to the same issue This is going to take a while So when I get stressed I go back to the world inside my head 39
But now the worlds I have created in there I can now start to let others see Though when stressed the written word evades me I need to relax to get most of it out So while others think I have matured I am still very much a little girl inside Who has now found a way for you to join me in my playground
THE LESSON OF THE ROLLER SKATES
I wanted roller skates for my birthday You will be turning 6 this year Both your parents are in utter shock at the request You cannot even ride your bicycle without training wheels Now you want this?! I got them for my birthday Because I had asked Despite my parents fears for me As ungainly at times I could be They firmly believed If I wanted to try something new They would not stop me Despite their misgivings To their surprise and others I took to them like a duck to water Yet I was nearly 8 before I could ride my bicycle without training wheels And struggled with so many other things When it came to trying new things Only if in danger Would my parents say no Otherwise they would encourage me as much as possible Not been hung upon seeing my limitations Which as a child I didn't see Allowing me to the surprise of many To go beyond what they thought could be Allowing me to find my own path Spreading my wings as I did so
I do my best not to get upset with others I do my best to avoid the situation Most times withdrawing myself in some way But if you do not listen If you do not let me be Get ready for the blast Just push me one step further This puddy tat just became a tiger This takes many by surprise They say they didn't see it coming I did not shout and scream I did not hurt another But once the blast is over I withdraw myself again People tread more carefully For a while that is They seem to listen when I speak But why do I have to do it this way? To get people to listen when I speak
THE UNDQUIET MIND
It is time for bed You can feel the buzz Your heart sinks to your toes You know you have been naughty You didn't stop doing your typing on the computer At least an hour before bed Now your mind is a whirl It's still running a mile a minute In some cases the ideas keep coming Or you keep thinking about the same things over and over This doesn't stop Even when you sleep You toss and turn the whole night long. You promise yourself not to do it again But all too soon the obsession to carry on despite the time, takes over When you are on a roll You chastise your self once more But you know You will do it again The vicious circle never ending.
THE TERROR OF RESPONSIBILITY
You're in charge now I am what?! You're in charge now They repeat The terror strikes within you The responsibility overwhelming I am not ready for this! He walk away Leaving you standing before the masses Now what? The terror deepens What if I can't do this? Will they listen? The fear of not doing it right is getting to you Though most of them are half your age, almost You are the one still feeling like a child You know you have trouble remembering all of what must be taught Will you be found out? You don't do well with crowds You do your best You are more than just a nervous wreck Just when you think you are ready to crack The instructor takes over Thank goodness He seems to sense your fear He can see that you are drowning He has thrown you a life jacket for now But what of the next time? You feel ashamed You know you cannot hide in the shadows forever But you are not ready for this!
THE TROUBLESOME TOOTHBRUSH
I know I have sensory issues So trying new things can be interesting to say the least I look at the toothbrush I now realise the colourful design on the back the head is not just for show There are ridges there It is a tongue and cheek cleaner I never had a toothbrush like this before So nervously I begin to use it Ugh! It makes my mouth feel all funny My lips and cheeks feel horrible Like when they have gone numb Then they begin to tingle quite badly So now I have to chuck it out I cannot use it That is not a sensation I wish a repeat of The challenge is now To find a toothbrush that doesn't have a tongue and cheek cleaner For most of the toothbrushes are going that way So the hunt is on for a toothbrush I can use That cleans my teeth properly For some toothbrushes clean better than others
TINTIN THE MOVIE
Hurray the long awaited day is here! I grew up reading The Adventures of Tintin Now I get to see the movie The anticipation builds Just the graphics alone look good of what they have shown on TV But once you see it on the big screen It blows your mind And that's just the 2D version But as I try to watch and enjoy the movie The dreaded thing begins to happen The graphics are incredible But unfortunately it seems to have triggered an overload episode for me There is just too much to take in My eyes feel funny and my brain feels like it is trying to play catch up Trying to make out what I was seeing As the scenes before me seem to move at lightning speed So for the rest of the movie I struggle to take it all in And annoyingly every time the bad guy came on screen I am mesmerised by the reflection of his glasses Making it difficult to concentrate on the rest of the movie Despite this unfortunate event I still enjoyed the movie As much as I could at any rate Can't wait for them to make another!
Tired Oh, so very tired Been naughty again Got a bee in my bonnet Went full out Almost every waking moment For two weeks Gulping down the food At times reluctantly stopping to eat Doing other things only when urgent Ignoring everything else Reluctantly going to bed at midnight Up again at 6:30 Now I am pay the price Tired Oh, so very tired Have so much still to do Want to do it all quickly Before the urge to do it is gone But can't My body has said Enough is enough It is time to rest
WHAT ON EARTH IS GOING ON?
You are 3 nearly 4 You are going shopping today with Mommy She places things into the basket You walk with her She stops at the toy isle She has a surprise for you New puzzles Suddenly you feel funny Things look funny too But you have no words to say it Mommy looks at the puzzles some more You don't know what to do Mommy asks if you like them After a pause You manage to nod your head But you are not really looking at the puzzles anymore Your mind is racing a mile a minute Why won't this strange thing that is happening to you stop? Strangely you are not scared But you are confused You don't know what to do Why doesn't Mommy see? Mommy starts to move You follow her By the time you leave the shop The worst is over It is almost all gone now But why didn't Mommy say something about it? Because she hasn't This must be the way things are Over the years I have had other such incidents But because no one made a fuss about it. Therefore I didn't get scared Some surely should have notices something was off But I didn't throw a tantrum about it Like most would do They took it as been just quirky me Because of this I took it to be the way life was No matter how confusing it was for me 46
WHATS IN A NAME?
How many times have you found this The name someone has Weather given or chosen Says something about them? My online name was chosen out of desperation All other names came back taken I had had enough After hours of searching each time I wanted to join something To choose a different name Eventually finding one that seems no one has chosen Dapper Muis In English Brave Mouse From a childhood nursery rhyme But only now do I see how fitting it is for me Like this little mouse who was boastful Saying he was not afraid of anything But when confronted Could not deny it in the end He was petrified of everything In many ways that is me The view of me everyone sees Is not really me completely Underneath my stiff upper lip facade I panic most easily Scared of loosing control Scared of things going wrong Scared of letting people see how badly flawed I am Scared of how people will react as they do not understand So like that little mouse I too, am trying to not let people see my fear For if they do They may try to take advantage of me For sadly to say many would do so They do not care about others So long as they can get what they want So next time you see a name What it is or means Could tell volumes about someone All you need to do is look For most likely more than not Strangely the name seems fits to whom it was given 47
WHERE HAVE ALL THE GOOD DOCTORS GONE?
Where have all the good doctors gone? All we seem to find now a days is Quacks G.P.'s, Psychologists and Shrinks We've had them all After so many tries We have now found a Family Doctor He is not like the Quacks What he does, all good doctors should do He really listens Asks questions Freely admits if he doesn't know or is not sure He will go and look things up He will even read what we have found out about the subject He will even try and send you to someone who may be able to help, if he cannot Most Medical practitioners Don't do that anymore All they want to do is pump you full of drugs Instead of finding the cause Then trying other things first When this wonderful doctor retires Or leaves this earthy plain I am going to have to try and find another But with the amount of Quacks growing out there It's like looking for a needle in a very expensive haystack
WHERE IS MY SCRIPT?
In this play of life On this stage Everyone is saying and doing their parts I try to follow and respond to those around me The look of disapproval and disdain the give “Keep to the script,” they say. What script? They hold up the one in their hands I look down at my hands but they are empty I do not have a script How do I get a script? They look at me in surprise Not understanding why I have none You were handed one the day you stepped on this stage Is their response Now use it or go away I stand there in despair What am I to do? I stand aside I began to watch Playing detective Seeing a pattern Then trying to follow it Time has now passed Most times people not do not know I have no script But every so often one does slip up And you are told once more Keep to the script
WONDERINGS OF WHAT WILL BE
It is good to have found out Before certain choices were made If they were made before what I know now Things could and most likely would have been much harder for me But it does leave me with some questions of what will be Will I be able to find someone in this lifetime? Be with him? I know that most likely I will not have my own children Shocking but true I do so love children But I am a realist too I need a lot of time out from the world The older and more stressed I get The more I seem to need to Such neglect I cannot do No child deserves that An absent or half hearted parent But what love I do have I can still give to another who has none Or to one just needs a little extra Even if it is only for a few hours But in the mean time I will place my trust in Heavenly Father. What I may want or think I need He may require differently of me Knowing there is reason for all things And a time for them too.
THE RINGING DOORBELL SYNDROME
People seem to ignore me when I speak This seems to happen quite a lot Especially when I am trying to get them to give me an order number for work that was done Or for them to fix a problem on their side I have found a way Without screaming and shouting Or using four letter words To get what I need It may take patience and the determination of a bulldog at first But with those who continually ignore you Especially in the line of business related problems With companies or people You know you will have continuous contact with This works best Have you ever tried to ignore a ringing doorbell? Not so easy is it? You have to answer it eventually When people hear me on the phone I can hear the cringe in their voices Yes I have now phoned for the hundredth time But eventually they give me what I want It doesn't mean I don't get stressed Having to do this over and over Does eventually get to me I am highly strung in that regard And would prefer I didn't have to But once the hard work is over I have found not too many can be as stubborn as me Most now quickly jump to When they hear me on the other end of the line Knowing it is the only way to get rid of me So when people try to ignore you Keep ringing that doorbell They will have to answer it in the end But the trick is don't stop till they do
INDEX Acceptance Alien, The Bad day to be a bully, A Baptism, The Blinkers Box A or B Cannot find the words Cleaning House Car ride, The Conversation, The Dealing with smells Denial Do not limit me Do you know you are disabled? Embarrassing situation, An Finding Work Flash of brilliance, A Food minefield, The Fragile Writings Friends Having a positive attitude Hermione's bottomless bag I am a girl I am not disabled I don't want to play tennis I just am Ignored Just because I don't like it Lesson of the roller skates, The Little girl inside, The Living in between Look at me Make-up Mountains or mole hills? Move faster Note to professionals, A Pressure cooker, The Recognition Recognition – Part 2 – The experiment Relevance of time, The Ringing doorbell syndrome, The Shattered Mirror, The Shopping for clothes Sorry we can't help you Spelling Stressed Stuck in time 'Tantrum', The Terror of responsibility, The Tintin the movie 14 35 1 34 8 9 10 11 36 37 7 10 11 12 6 13 2 38 14 15 16 5 15 18 17 19 20 21 40 39 20 21 22 23 24 3 36 25 27 28 51 37 28 29 31 32 33 41 42 44
Tired Troublesome toothbrush, The Unquiet mind, The Very different student, A What on earth is going on? What's in a name? Where have all the good doctors gone? Where is my script? Wonderings of what will be
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