Transplanting.....

     Daisy and I are transplanting to a different part of the garden.


     This is causing a lot of autistic differences to surface which means that blogging is not really an option.


     Leave a message at the beep, and normality will be resumed, just as soon as we figure out exactly what normal actually is.
























"BEEP"

Stop it.....that HURTS!

     "Sticks and stones can break my bones,
      But names can never harm me."

     I was taught that, almost religiously at junior school. It didn't matter what somebody said to you or about you, because it's just words. 

     Some decades later, I have a new twist on the rhyme:

     "Sticks and stones can break my bones,
       But words can really bloody hurt me."

     Through no fault of mine - at least as far as I can see - I am the victim of what I can only call a smear campaign. Now I thought that was the exclusive domain of politicians and the like, but no. I have joined the gang! I'm a fully paid-up member. I can see that you are impressed. No? Me neither.

     I do not regard myself as being a terribly good person in the same way that I do not regard myself as being a very bad person. I am just me. With the same feelings and emotions as everyone else.


     Yet, because I have a child who can sometimes talk to me as if I were filth, and who doesn't attend school because I feel it is better for her to be educated in an environment where she isn't filled with disabling anxiety, and who cannot comply with even the smallest demand sometimes; I have been ridiculed and accused of cruelty and even mildly threatened by someone who doesn't even know me!  

     How in the name of God does that work?!


     This person has made outrageous assumptions based on one encounter with Daisy and various conversations with another person with whom we are mutually acquainted.


     I am not about to "name and shame", not my style. Nor am I going to call this other person names, not because I don't want to, but because I have a bad back and find it impossible to stoop to such a pathetic level as theirs.


     Why do the ignorant people of this world feel that it is their right to try and destroy other people's lives? I have done this person.....no wait, I can't keep calling them "this person", we are in a flower bed....Hmm....irritating unwanted unwelcome plant.....thistle? nettle? BINDWEED!


     I have done Bindweed no harm that I know of. Yet it has systematically dripped poison into the Head Gardener's ear and spread malicious lies about me to all and sundry. People I might actually meet. People who now have Bindweed's opinion of me in their heads which may in time cause conflict as I am NOT the person Bindweed has made me out to be, which should be obvious within the first minutes of meeting me! Which shows Bindweed to be a trouble-maker and me just a normal everyday person. I'm not a saint, I'm not a demon from the pit either. I'm just me. I am not trying to be something I am not. I am just trying to be.


     If it weren't so damaging, I would be flattered. Bindweed's feelings towards me are so strong, they have to try and destroy everything I hold dear. That's a powerful emotion. Utterly negative and totally wrong, admittedly but still powerful.


     As any gardener knows, unwanted pests are not always easy to get rid of. Especially pests that don't know when to curl up and die.

     I am trying to get through to Daisy that it isn't OK to hurt people's feelings. Working with her to understand that the things that she says might have an effect on someone elses' feelings. In good and bad ways. Bad things you say hurt people. Inside. Where you can't see it. I do this because Daisy doesn't have the ability to "hold her tongue". Indeed, if I told her to do that, she would. Literally. I have to do this because Daisy is autistic. She doesn't have the understanding built in to her brain. It needs to be lodged there and she needs to be reminded that it's there. Things that NT people take for granted are not a "given" to those of us dealing with autism. 


     I have often been told that having an autistic child is "a gift from God". I have issues with the whole God thing, as people know, but if God is giving out gifts I would have to say that the real gift is being NT. Knowing when to speak and when to shut the hell up, understanding when someone is hurt or happy because it shows in their face and body language, realising that words hurt. THAT is a "gift from God", yet it is taken for granted and abused by every single one of us on a daily basis. Without a thought for the consequences. Or, worse, to deliberately cause a set of consequences that will damage someone else. Daisy simply doesn't understand consequences, if you put a scenario to her she usually cannot comprehend it. Even a simple one will cause puzzlement at best and deep distress at worst. But us NT people, those of us who belong to the "normal" club, we hold that power in our hands and hearts and we misuse it every day. We have the ability to "hold our tongue" and we do not. 

     Give me a black and white ultra literal autistic person any day.

     "Sticks and stones may break my bones,
       But words should be chosen wisely ."


    

    

 

 

Don't Do That.....Your Child Will Develop Autism!

    I have read 2 articles today regarding "How To Give Your Child Autism". Not only does the content irritate me intensely, but the reports contain no clear facts or real supportive evidence. 


     Article 1 is a "proper" report from (where else) America, which boldly claims that being obese and pregnant causes your child to develop autism.


     If that weren't bad enough; the second thing I read declared that losing weight during pregnancy, because of chronic morning sickness, causes your child to develop autism.


     WHAT??????????


     I don't know whether to laugh or cry.


     Isn't it difficult enough being a parent to an autistic child without being admonished for either being too fat or too ill during pregnancy? The "too fat" I can understand - although not the autism link - but "too ill"???? How on earth did we get to that point???


     I am stunned by the tenuous connection to the morning sickness, it's not as if women elect to spend 9 months being horrendously ill. It's not a life choice. My own mother was desperately ill while pregnant with my older sister, this was at the time when doctors were prescribing Thalidomide to help ease the sickness. I actually have to stop and think about the very narrow escape that they both had. Life for them could have been so very, very different had she been prescribed it, and I probably would not be here as the youngest child of the 2 of us. Incidentally, both myself and my sister are NT.


     Personally, as I cannot speak for anyone else other than from an anecdotal perspective, I suffered not even a bout of the hiccups during my entire pregnancy. Yet my daughter was born with autism. 


     
     The "proper" report regarding obesity just fills me with horror, if I am to be honest. Several friends who have children approximately the same age as Daisy have all dismissed the article as, um, "nonsense" as none of them were horribly overweight or even overweight at all when pregnant with their autistic children. For myself, as someone who has struggled with weight issues for years, I can honestly say that I was certainly not overweight and most probably underweight throughout the whole 9 months. It took me 10 days to get back into the size 6 jeans I was wearing before pregnancy. Not something to be proud of, but it's true. Yet, my daughter was born with autism.


     Here in the UK back in the days before and after Daisy was born, there was a huge scandal brewing. Children were being vaccinated against Measles, Mumps and Rubella, all potentially horrible diseases which I whole-heartedly agree MUST be wiped out and vaccination IS the right way to do this. HOWEVER, I do not agree that a very small child should be subjected to the almost continuous rounds of vaccines containing Diptheria, polio, whooping cough, mumps, measles, rubella and any others that I have probably missed. How is such a tiny system supposed to cope with all these horrors? Surely there is a better way to keep these awful diseases (any one of which has the potential to kill you) away? Sadly, I do not know the answer to this, and I will always advocate vaccination, but does it really have to be in such a short time frame?


     Anyway, back to the scandal. A doctor here in the UK was claiming that the Measles, Mumps, Rubella vaccine (MMR) was causing autism and bowel problems in the children who had received the vaccine. This eventually gained massive news coverage to the point where the then Prime Minister and his wife were questioned as to whether they had had their baby son vaccinated with the MMR. They refused to answer, claiming that it was a personal matter and not for the public domain, which added more fuel to the fire as most people speculated that they hadn't vaccinated him. I made a measured decision to *protect* Daisy from autism and had her vaccinated against measles, mumps and rubella individually and at a price as the NHS would not offer any other form of vaccine other than MMR. My GP was very cross with me, and tried to both bully and emotionally blackmail me into giving her the MMR. It failed. I wasn't prepared to *give* my baby autism. The doctor who started the scandal has since been utterly discredited. Yet, my daughter was born with autism.


     I cannot help but hope that this blame mentality will eventually stop. I deeply dislike the use of the word "develop" in the articles I read. It makes me  smile though when you consider that autism is a developmental disorder. How does a developmental disorder develop? Maybe the "doctors" should study that! 


     I can fully understand why a parent of a newly diagnosed child would want to blame something, but I can't help thinking of all those overweight mothers who believe that because they are fat their child will be autistic. Or those mothers (like my own) who spent 9 months feeling so ill and are now waiting for their child to "develop" autism. So very unfair.


     It is my personal belief that autism is caused by a gene. It just hasn't been identified fully yet. There is a reason that Asperger's runs in families after all......


     I do not believe that I was chosen by God to be the parent of an autistic child.


     I was not too fat when pregnant.


     I did not have chronic morning sickness.


     I do not believe that MMR vaccinations cause autism.


     My pregnancy was completely normal.


     Daisy's birth weight was fine.


     Labour with Daisy was uneventful and there was NO medicinal intervention or assistance.


     Yet, my daughter was born with autism.


     Daisy is autistic because she is genetically programmed to be. 


     BOTTOM LINE!! 


     Nobody wants their child to be programmed to be different, but they are. 


     People have GOT to stop blaming the nearest thing to hand and start channelling that energy into positive articles and research. Then, maybe society and the media will start to accept autistic people and the fact that they are different, and begin to build a future where autistic people are allowed to be autistic people and autism itself is not the bogeyman!








     


     

Write On....

WOW!!!
It has been the longest time, hasn't it?


Now, keep it under your hats...but the reason? Bloggers Block! I tried so many times to sit in front of the laptop but every time I tried to write, it just wasn't happening. Write went wrong, you could say...


So, anyway, I left it until I knew I would be able to write with a degree of positivity and actually finish what I'd started! Now I feel I can.....


Let's get on with it then.....


First news: I received in the post this week some brilliant little cards. About the size of a business card they are issued by the NAS (National Autistic Society) and are designed to help autistic folk who find themselves in a situation they are unable to deal with. It's easier to just tell you what the card says.......


"This person has autism
> Autism is a lifelong disability that affects social and communication skills
> People with autism may behave in unpredictable ways as a result of their difficulty in understanding language and social situations
> People with autism are likely to be extremely anxious in unfamiliar situations
> Please help by being understanding, patient and tolerant."


Isn't that great?? I have been struggling for ages to write a succinct description of autism and have never managed to get it below an A5 size...so this is just grand! Daisy is much taken with them too, and insists on carrying one with her every time we leave the house. I was expecting trouble but she surprises me (yet again) with her attitude to autism.


Talking of attitude to autism (not a bad link considering it wasn't planned!) Daisy, the Head Gardener and I have been chatting a bit about her PDA and how it affects her life and the impact that it has on us. Currently, she is more, not in denial as such, but wishes she didn't have it. She blames all her negative behaviour on her autism too, which is virtually everything in her eyes, because she feels that everything she does has a negative impact on everything/everyone else. Obviously this is completely untrue, but sometimes is it tricky to find a positive in all the negatives. She is not a savant but she is very good with numbers and her visual memory is outstanding. That's not just me being all "mommy" about it either, she totally understands the logic behind numbers. Numbers don't change; 2+2 will always equal 4 and there is order and sequence to numbers that appeals to her. Already I can see the day when I will no longer be able to teach her maths, as it was always my weakest subject back in school, so I will have to find a tutor! Never thought I would have to say that, and while it sort of disappoints me that I can't fulfil the role, it delights me even more that my Daisy is that bright!


Literature is much more difficult. To set the tone, I bought some English books to use at home school. She took one look at the cover and this was how the conversation went:
Me:       Look, I bought some English books to use in home school
D:         What do I want those for?
Me:       Well, to help you learn English....
D:          (interrupting) But I am already English! I know how to speak English, what do I  need a book about it for?? 


Hmm.....a good and very logical point and a typical example of a NT person (me in this case) NOT thinking before they speak! It has rather scuppered my attempts to get her to understand even the basics of sentence formation and punctuation as she feels she doesn't need to know it. To a degree she is right, I mean everybody seems to text talk (which I hate with a passion I cannot convey) and it will only get worse be used more often and more widely, but I still feel that at least a basic understanding should be in place. Sadly, words for Daisy are deeply unpredictable. Individual letters have sounds that disappear and change when grouped with other letters, making spelling a nightmare for her! She has a good reading level, and has always been able to put meaning to the words when reading aloud and she understands the words she reads, but write them? No way! Even a simple 4 letter words leaves her struggling as she cannot grasp the order of letters and gets very frustrated. Even her brilliant visual memory lets her down as even with the word written in front of her, it takes far longer for her to remember it and she gets very cross with it all.


Despite all this, I remember a time when she wouldn't even pick up a pencil to try, so even though it is a very long road we are progressing in the *write* direction, just with teeny tiny steps.


There....I have written a fairly coherent blog for, I realise with a degree of shock, the first time this year! Good job I do this for fun and not a wage....I'd be in Cardboard City by now!


Goodnight! 

.....additional

     After spending a fabulous day together yesterday having a "girly shop-fest", exploring our new surroundings and finishing up in a Victorian Tea Room eating toasted crumpets....


.....Daisy ventured out in to the Back Street.


     Less than 5 minutes later, she returned sobbing as they had all immediately started calling her horrible names and telling her they were not her friends.


     In Daisy's own words:


     "This was the best day ever, and now it's turned into the worst."


     I have no more to say.

Back in the Saddle....

     OK.....it's been a while since my last blog.


     I'd love to report that things in the garden are rosy, but I cannot tell a lie.


     it isn't. It's really quite awful.


     The backstreet politics run along seemingly unabated. Maybe this is just how NT kids are. I don't know. Maybe I am some kind of expectation freak who is constantly astonished by the behaviour of NT kids, but I was one for a while, and I don't remember anyone being on the receiving end of such wildly fluctuating behaviour. Bullying, yes, because someone was fat or black or Chinese or wore glasses but it was dished out and taken (although it was painful at the time, and I leave it up to you to decide whether Yours Truly is fat, black, Chinese or Four Eyes) and then dismissed. There was always someone else to mock or ridicule and the fat, black, Chinese and short-sighted were left alone in favour of the next new victim.


     I KNOW kids are fickle and shallow, as previously noted I was one myself once, but to me....and I really am trying to NOT be an "autistic mom" here....it seems hugely over the top. One minute they are all clambering over the garden gate to get Daisy out of the house to play, and the next she is running home sobbing because they have all turned against her for reasons she cannot comprehend. To be fair (or possibly unfair, it's all about your view point) I don't understand it either! Only on Sunday, she ran home sobbing because some boy or another had brought up the Biting Incident (again), and demanded to know why she had 
bitten Teasel. Again. Daisy was distraught and then, to add to it, her toys (which she insists on taking out with her) were thrown all over the place causing her even more distress. See, they aren't toys to her. They exist in her reality as real, alive creatures. They feel. They speak. They live, and they can die.


     As I have said in a previous post, Teasel's mother didn't run to our house breathing fire and retribution. She did nothing. At least as far as I can see. She never banned Teasel from playing with Daisy, and Daisy and Teasel get along fine. At least they do, just as long as one of the others doesn't "fall out" with Daisy. Then they all turn against her and even she doesn't know why.


     How do I deal with this??? I am at a bit of a loss. The Head Gardener and I both advise her that she needs to be assertive and just tell the troublemaker of the day to mind their own business. (Teasel has been apologised to and he doesn't appear to have a problem with it, so why should anyone else?) 


     Daisy cannot do this, incidentally. She doesn't have the courage or the confidence to stand up for herself. I cannot fight this battle for her, as it wouldn't happen if I were there, I cannot intervene at the time. I can only support her and hug her when she cries like it hurts real bad.....


     


     


     

Being Autistic Can Really Suck.....

     There's trouble in the flower garden.....


     Daisy and I recently transplanted ourselves to a new location and a new start. After all the problems at the beginning of this year, I simply couldn't stay where I was; the thorns were too troublesome and the memories and constant reminders of the past....well, I didn't want to be constantly reminded.


     So, we discussed it and we both agreed that transplanting was a good idea. I knew it would be tough on Daisy but I felt that it would be tougher if we had stayed where we were.


     So we up-rooted ourselves and travelled. It was tough, and we wilted a bit and wondered if we were really doing the right thing, but the dye was cast and we both rose to the challenge.


     If I had been asked "how's everything going?" on Monday of this week, I would have smiled and said that it was all going perfectly, our new life was going exactly in the direction we both wanted and although there will always be challenges with an Autistic child, they aren't new or different or anything we haven't faced before.....


     If you had asked me on Tuesday, however, I would not have smiled because it has, in the space of 24 hours, gone a bit runny.


     Daisy has made friends with the local children. She went for tea at theirs, we fed them at ours.....just like it should be. Just like NT children. My Daisy was doing NT stuff with NT kids.....happy me! Happy Daisy. She was even relaxed enough to tell them (and parents of her choice) that "I have Autism". How, I thought to myself can it get any better. The children and the parents seemed to accept her and told me how nice she is.....


     How quickly the seeds of unwanted plants have spread to my Garden of Eden.  I find to my horror that the local children are now, seemingly, going out of their way to mercilessly bully my poor little Daisy.


     Her crime? Well, I admit she was kind of wrong, in that she bit a boy younger than her. He and an older boy, for reasons unknown to me, were pinning her down. Unable to get away, she reverted to what she always does when panic-stricken and restrained. She bit. She does it to me every time I have to keep her safe. 


     The moral dilemma that some might see here, is that maybe I should have mentioned that Daisy is violent and aggressive when she feels "cornered", but how the Hell could I have known what would happen? I am also loathe to advertise the bad bits of her Autism as, let's face it, it's going to colour someone else's opinion of her......


     Anyhow....the next day she goes out to play as usual to be confronted with out and out hostility by almost all the local children that she played with. They were rude and mildly aggressive to her and deeply hostile. They used words against her that children should certainly not use against one another.


     This behaviour has continued every day this week. Daisy is now reluctant to go out and play, and when she does pluck up the nerve, she returns in tears...she is unhappy about going out and really needs me with her....not the steps towards independence that I was hoping for.


     It has been witnessed that an older boy seemed to be approaching her with the intention of scaring her....but he was prevented by the arrival of the Head Gardener who intervened merely by his presence. 


     I cannot approach the parents of the children as I do not know them, and Daisy does not know where they live, and although I do believe her, I have to have proof that a particular child is behaving in a hostile/nasty way to her. I don't want to accuse someone of something they haven't done....


     I cannot quite comprehend the severity of the hostility of the children towards Daisy. I know that she shouldn't have bitten, but she shouldn't have been pinned down, and the parent of the bitten child should have come to me (they all know my Daisy; once seen never forgotten and all the children know where she lives!) and discussed it with me. They didn't. 


     Now we have some weird Lord of the Flies thing going on here.....OK, that might be a bit over the top, but the children have seemingly taken the law into their own hands and are meting out their own type of punishment. They actively seek her out to taunt her and tell her to "fuck off". Yet she is not approaching them......


     It is hard to watch her learn this very painful lesson. She (as I) does not think that the punishment fits the crime but is not allowed to offer any kind of reparation. 


     Is this how it is with NT children? Her cuddlies who are real as you or I to her have been taken from her and "hurt", she has "accidently-on-purpose" been run into by a pushbike and her feelings have been severely damaged along with her very fragile self-confidence.


     Well, we are both a bit fed-up with it. If this is what mixing with NT children are like, then I think we need to reconsider who we make friends with.