It has been a while…

Hello out there. If anyone is still around. I’ve been AWOL because I need down time and I needed a serious amount of comprehension time. I’m not sure I know any more than what I knew last post.

But I am facing a difficult time. My eldest son, H, is being slowly pushed out of the schooling system. The school wants him gone, basically. He is in year 9 and I’ve been told he’s been given ‘chances’, ‘opportunities’ and they have ‘done all they can for him’. The sooner he can leave that place, the better.

To what, though? No one will employ him. I face an uphill battle getting him into uni at only 15. He cannot sit at home on his computer.

All the school is telling him through their actions is that he is to be punished for being who he is. He is to be out cast from the norm. Oh hooray.

All because he won’t do some work and he won’t do homework. He is now on a path where he feels extremely alienated from society. He knows life is unfair, unjust and cruel. The school is kicking him in the guts.

Whilst I am deeply disappointed in the school, this could be a great time for H to open himself up to the world. It might be good for him in the long run.

I am clearly too emotional to have all this make sense.

Yet another Ugly Ducking is desperately seeking his home, his tribe. It breaks my heart.

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This is the reality.

I often get asked what I’m doing/have done in the weekend. Usually it is nothing. Or I answer listing the chores I have done. This is my life as it currently stands.

Let’s take this long Easter weekend, for instance. It is a 4 day long weekend. While others are camping, eating out or enjoying water sports, I was at a Marxist Convention in the city – an hour train ride away.

It was held over 3 days and was a series of 1.5hr long talks and commentary sessions, from 9.30am til 8.30pm. It was hard going for my brain, which has been away from Marxist terminology for 15 yrs. I went, simply to chaperone H, who has no street wiseness. I did it because I love my son and his current interest is Communism and Socialism. Why would I not take him?!

I had to answer his questions, remind him to eat and drink, keep him grounded and assure myself he still had his belongings. I was on high mental alert the three days and I came home so taxed that I was asleep by 8pm. H is sometimes so anti social that he just ignores those who speak to him. I had to keep him civil enough to ensure a polite interaction went by as quickly as possible.

Then yesterday was D’s normal prophylactic injection day. I inject a product called Factor into his vein twice-three times a week. D is supposed to be testosterone tidden so his veins will pop up. This isn’t happening because D uses food to self soothe. And during school holidays, he eats more. I work full time, so I cannot monitor his eating. So, D is putting on weight and the two veins D will let us use are scarred and hard to find. I dug at his arms 6 times yesterday…and no blood.

I tried today and still no vein access. I will try tonight. If I miss, his veins will need a rest for a week. So, the risk of D having a bleed sky rockets. That means time off work, going to the children’s hospital and consoling an autistic boy who hates haemophilia.

Bleeds do not happen by schedule. They happen whenever. Day, night, at home or out. I am now on mental alert for the first sign of a bleed. It means an hour drivd into the city. Not fun when I have to fix heavy trucks tomorrow.

Don’t get me wrong. I am not complaining. D is alive and I am grateful. I am explaining why I do not do things others my age do. I cannot get drunk; I cannot go out with mates. Both my boys are increasingly anti social and are not wanting to leave the house. They do not want to go camping, go out and watch football or go waterskiing. There are sensory issues and haemophilia to consider.

Teaching the boys to do chores is time consuming. I have to supervise the whole lot. H wonders if he has done the job right and D slacks off. So, I do most chores myself.

I am tired. I wanted a few days to recover from life. Instead, I’m now nervous about finding a vein a few mm wide.

All of a sudden…

I’ve noticed I am petfectly ok with being autistic. I have been seeking this inner peace for so long. I finally have it. It does not mean life is by any means perfect, but I am quite at ease with  being me. It has happened of its own accord quite suddenly.

Who’d have imagined I’d have one word instill me with a restfulness that I have been dreaming of? And it feels liberating. I am what I am. The horrid self talk has died down a lot. I don’t expect myself to fit in – at all even. I can breathe, listen to the birds, enjoy my coffee and feel there is a tomorrow worth staying here for.

A lot has to do with a change in management at work. It makes a huge difference to have a calm manager who sees the big picture and to assure me all is ok.

I’ve noticed I am more autistic than ever. I slur my words more than usual, I bump into things a few meters away, I don’t force eye contact (yuck!😨), I flit from topic to topic, I laugh alone about things I remember, I am silent most days, I tend to avoid Facebook, I am more besotted than ever with perfume, I listen to physics podcasts every night, I eat the same foods for weeks on end, my hair is an absolute mess, I enter my brain and look absent more often, I rock and squeeze my muscles, I clench my jaw and grind my teeth in repetitive patterns, I collect Darth Vader items (pragmatic things like cups, keyrings, notebooks etc), I daydream about being Darth Vader (semi kidding), I still dream of owning my own COMPLETE Pantone card collection and I go slack jaw over the new Ford Mustangs as I see one.

If you were to meet me, you’d see a very immature child-woman. I have a reasonably muscled, but lean body, an increasingly grey mop of hair, dark bags under my eyes and a half asleep look that I didn’t know I had til just a few years ago. I seem quite teen like, in that I am still very mobile and I dress in tomboyish clothes. But I can also be a cranky, bland middle aged lady. I rarely come across as someone like Julianne Moore or Monica Belucci – women around my age. I am the weird one making faces in the corner of a group photo. And this is now ok. I am ok.

 

Hooray!

Finding my amazing!

Alas, this is not an upbeat sort of post. More a wistful, contemplative type post.

As I’ve mentioned briefly, my autism involves an inability to know of my presence in the world. I literally have to ask and be told about myself. I know facts about what I am, such as my height, weight, eye colour and the like, but I know nothing about how I am received by others, what I look like in relation to others, or what I do well at.

I’ve always done what I enjoy, though my academic career happened because I thought I was good at understanding theory, had a razor sharp mind and I could write a decent thesis. I was told by others that what I did so naturally was fantastic. I am not so sure.

My marks by the end of my BA and Hons years were indicative of my talent for socio cultural anthropology, but I suspect I simply cracked the code for writing what supervisors wanted to hear. I know I had an uncanny ability to read Foucault half asleep and paraphrase what I read. But I STILL cannot understand anything Homi Bhabha writes.  *shame face*

I don’t actually have any of the things some have said I have. I appear to have them. Truth be known, I don’t do anything other than because I enjoy it, or it is duty for my children and mother. I don’t do things because I am good at them. I tried, as a teen and into my 20s, to do things to find out what I was good at, but I ended up hating what I did. I discovered in my late 20s/early 30s to follow my heart and not my brain. I now know why I do not trust my brain; it simply has no idea.

Anyway, all this is to set the scene. I would like to be known as being amazing for something. Something I find meaningful. Something that aligns with my ethics, morals, values, interests and my need to leave a noted mark of my presence here. It does not require I amass a fortune or fame. Just to have others say “Aren’t you amazing?!” about something I do.

I don’t want it for an ego boost, to flaunt my abilities over others, but to know what it is like to feel I am giving something of value to another. And have it appreciated. And to let me know what it is I can do right.

I have to gauge myself in not being told off. If I am not causing upset, offense or creating mistakes, then I must be ok at things. But that isnt’t enough. I’d LOVE to know what I great at; to find my amazing. I am just not told. I’ve only been told during my PhD years that I was known for my razor sharp mind. It sure didn’t feel to me I did anything remotely worth mentioning, yet about 5 people said it.

Right now, my brain is mush. I haven’t fully recovered from pregnancy, breast feeding, moving overseas and back, doing body building comps, working at a physically demanding job, haemophilia, family break ups and our diagnoses. It has been an ongoing drain of energy since 2001. I am not sure I’ll ever have the energy to be razor sharp ever again. So, how else can I find my amazing?

This autistic black duck is a jack of all trades. I am most certainly a master of none. Am I that bland a person? That invisible?

What is your amazing? (And Ms Wave, we all know yours, so you require no comment. 😂)

I have a dream!

Weeeeell, sort of. It is the outline of what I’d like the rest of my life to be.

I have always said I’m not money oriented. Largely, that holds true, but I am aware that some degree of quiet wealth would afford me some opportunities I’d love to experience and I’d be able to address some financial wrongs others have caused those close to me.

I’d love to have my own humble abode. To be able to deck it out in autism heavenly sensory ways. I’d have a slide into a sunken lounge and beanbags and lovely Moroccan cushions scattered all over the floor. I’d have a Snoezelen set up in said sunken lounge, so I could trip on atmospheric sounds and acidic light projections. Each room would have a squeeze roller I’d have to roll through to enter and I’d have my bed in a foam castle. There would be a golden rope I’d have to climb down to get off my bed.

My bathroom would be a fernery with a giant bath and a duck living in a small bath next to me. My house would have natural lighting with sky lights everywhere. I’d have down lights with dimmer switches.

My kitchen would have a wood oven and easy to clean floor and benches. My fridge would be enormous and my freezer to be walk in. I would have a FULL Italian espresso machine just for my own use. It would be red.

The most important room would be my salon where I’d have my perfumes stored. It would be humidity proof and temperature controlled. There would be crystal bling, mirrors, powder puffs (though I loathe touching powder), a lovely sateen stool for me to sit and a book chair for me to contemplate. The scents would be arranged according to houses and notes. All would be boxed and all having whatever bath products available.

I’d need an extensive library too. No electronics allowed in the library. All furniture must be wood. No food, no drink. (Except my coffee.) I’d have a bay chair in the window to capture the sun on weekends and for my umpteen kitties to bask.

I’d have room to practice my handstands against a wall and I’d have paints and easels all over the place. There’d be a telescope on the roof, automotive tools in my shed and bubbles on every bench – in case I felt like blowing bubbles!

I need to travel, so twice a year visits to where ever I felt would be ideal. Just two weeks away would do; not including the travel time!

People have been cheated of money by my step father. I would love to be able to give them the money they gave him. It made me ill, as a child, to hear of what step father had done. I vowed that if I ever had enough (about $200K) to repay these folk, I would. A cheque from an anonymous donor. Not a word, but karma kissing back.

And I would love to be able to set up scholarshops for autistic women to go to uni or enter a trade. I am a passionate advocate for autistic women to have a meaningful working life, with a decent wage or income stream. Those with children, are single and from a background of abuse rarely thrive financially. It is wrong. I’d love to make life more satisfying for women like us. To wake up loving what they do, doing it with pride and knowing they and their children are safe and secure. I just don’t know how I can make this happen right now.

The idea of a house, a home, to call my own is a pipe dream. I will travel, but it will only be short beach breaks in Asia. I am realistic enough to realise making money isn’t my forté. I wish it were. Not for the greed, but for the opportunities I can share. It is the last part of my dream I want to see come to fruition. No one should be unemployed simply because they see the world with a different lens. We all have something to contribute and too few of us know what we bring that is positive.

So many of us are told daily how we are wrong, stupid, naive, unintelligent, a burden, missing something… but not told what we do right, what we do well and what could make a future for ourselves. It has to start with an autistic business mindset. Sadly, the very thing I lack.

It is free to dream. It is liberating. And it is better than me being in my self imposed quagmire of self pity. At least my mind is moving forward and my soul is demanding action.

We are all officially diagnosed as autistic.

Well, my two boys and I. Much to the chagrin of my mother, with whom we live. She is outnumbered as an allistic, but I do have my doubts she is all that (pun intended). I digress…

D’s diagnosis was quite simple. I chose the same man who diagnosed H because he knows us, advicates for an all inclusive world and I know him. D was diagnosed quite quickly, like H, except D presents in a more classic way to H’s Aspergery, HFA way. (H likes to use HFA. D and I prefer autism.) I gather the differentiation is speech. D was a very late speaker and is not too keen speaking unless it is to someone he really likes and wants to bond with or he is recalling songs or dialogues from Youtube. He also slurred his words til he was 6yo and spoke in an American accent til he went to kinder. There are very marked differences between how my boys present.

H likes to flsp his arms and use quick movements to stim. He has a loud voice and does not mind making annoying sounds. He has problems coordinating his strength and position of his body in space, so he has broken do many dining sets and glasses. He is very tactile sensitive and hates surprising, loud noises. His IQ is quite something and it means he can mask his autism well, using his observations of people.

D, on the other hand, holds his body in awkward ways, runs with a 3yo gait, withdraws from people, has dead pan expressions, uses a lot of echolalia in his ordinary speech (mimics what others say), hates certain clothing and bed sheets, sensitive to smells, very particular about routines and order (ok, he is anal) and has a very strong sense of social justice.

The boys are chalk and cheese. But they are best mates. They bounce off each other’s strengths and weaknesses, share similar humour and like very similar things. I am so blessed to have two beautiful souls as sons.

So, I had to fill in two questionnaires, as I had already compiled a 6 page report and sent it last week. I sent school reports and examples of things others had made for D whilst he was last in hospital. D’s general IQ was assessed and a pattern apparently emerges that is particular to ASD folk. D’s cognitive wraknesses are the same as H’s, but an octave lower. So, while H’s vocabulary was IQ equivalent of 142, D’s was 132, for nstance. And all the others were the same overall graph pattern, yet pushed down the chart a tad.

I had an hour interview with the psychologist to clear up some issues and answwr questions, but D was clear to the psychologist within half an hour. There are tell tale signs. D smiles at things he thinks of at random times, he rocks visably when nervous, mininal eye contact, he lacks any expression until he REALLY knows you, he answers all questions as if all questions are closed (requiring single word answers), he wears clothing I’m not overly fond of and makes him seem like Comic Book Guy from The Simpsons, and he can quickly correct mistakes in factual information.

Now I wait for a report. A copy will be sent to the school. This assessment was essentially done to provide the school with his diagnosis in print. An expensive exercise in appeasing the authority. But it is done and D seems happy to have a reason to why he feels so different.