Accomplishments at warp? Make it so.

To say I was experiencing feelings of accomplishment right now would be an understatement. Life is still difficult yes. I’m still tittering on the brink of Autistic shutdown, yes. But I am doing things I never thought in my life that I would do. I’ve come to an understanding about myself, an awareness, that I never thought I’d have.

I’ve started Kobash Mats. By Elle. Making special custom mats for people with assistance/service dogs, pets, and babies. I never ever thought I’d use a sewing machine, much less be capable enough to sew anything usable for anyone. I’ve had some flights of fancy of making dog collars or some such, every now and then. I still couldn’t sew from a pattern to save my life. But I can make mats ¬†https://www.facebook.com/kobashmatsbyelle/?ref=bookmarks ūüôā

When I get feedback from people about a mat I’ve made them, that they like it, and its what they wanted, I get a rush of satisfaction. And each step of the way, learning how to make to make the mats more efficiently, the new innovations to go with them, I sit back and wonder in amazement that this is something that I’M doing. Me! And oh the happy dance when I ordered the new sew on care instructions labels with the logo that a lovely lady made up for me was just the best! I feel so professional ūüėÄ

Of course, it isn’t easy. I never know when I’m going to to get an order. Sometimes it’s weeks before I do. But I’m loving the creative side of it. Of working with each person designing their mat, seeing the end result which is a reflection of themselves, and that they trusted me to make it for them. Fills my heart right to the brim.

And to top it off. The most amazing thing. This honor I was given, to see something I’ve written published in an online magazine for Autism April.

http://www.spectrumwomen.com/parenting/through-my-eyes-as-an-autistic-mum-elle-cook/

I’m floored that they asked me. Yes, I try to stay up front with all things Autistic. Our world. New news, running my group (or trying to. I’ve been a bit slack of late), the pages too.

https://www.facebook.com/PlanetAspergiaCommunity/

Trying to make sure people have accurate information about people like us. It can be hard. Especially when I talk with parents who, while they mean well, only have the wish to see their child be ‘normal’. Little bits of my heart get chipped away every time I hear that.

While I feel so accomplished at the level of self-awareness I ¬†have achieved in my life, at times like that I hate it. And I long for the time when I was oblivious to the Neurotypical world and all their idiosyncrasies and fear of the unknown and different. When I was nieve and innocent. I’m not any of those things anymore. I’ve grown hard and cynical and sarcastic (yes we autistics can understand sarcasm. It’s a learned language at which I’ve become quite fluent). I’ve grown a sharp edge with which to protect myself from this neurotypically dominant world I’ve found myself dumped into.

The things I’ve learned in my years alone, just my son and I are so valuable to me. And while I cherish them, the knowledge I’ve gained in this time is a two-edged sword as well. It gives me strength but also cuts me when I see ignorance about Autistics so prevalent and crushing and sinister growing and surpassing clear thinkers and logic spinners that I fear that any acceptance we achieve will be so far into the future that data will a real thing and beam me up Scotty will an everyday norm (please check your Star trek reference at the door).

I would love to educate more people about the truth about Autism. But I don’t know if I have the strength to handle the ignorance that I will surely face if I do. So, for now, I will blog in this little blog that goes still undetected by the majority. I will post about my self-awareness and knowledge about how our brains work. All the twisty, happy flappy, stimmy little and big things. ¬†And surf in the punk rock music ear tingles straight to the chest feelings of achievement that I’m feeling right now at my accomplishments.¬†A little self-pride is ok, isn’t it?

A little self-pride is ok, isn’t it?

 

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And what all we Autistics fear most……Autism Awareness Month….dun dun DAAAAAAAA!

It’s here. What we Autistics dread every year. Autism Awareness April.

But why do we dread this month? A month set aside just for us? A month to raise awareness about Autism. To help us. To make us known.

It sounds innocuous¬†enough. But in reality, to Autistics like myself, it only serves to make us more aware that organizations like Autism $peaks do not speak for us. It’s not about including us. It’s about raising awareness about the plight of Autism. That it’s the worst thing that can happen to your family. That it tears families apart. That your life will be ruined if you have an Autistic child. It’s about eradicating us, and if that fails, it’s then about forcing us to appear as “normal” as possible so as to not make everyone in neurotypical society uncomfortable in our presence.

We have drilled into us from the moment of diagnosis all the therapies and courses, diets and pills, natural remedies, chelation therapies, ABA therapies, bleach enemas and shock therapies in every effort to purge Autism from our systems. And when that doesn’t work the anti-vaxxers will get their claws into unsuspecting parents blaming them for causing their child’s¬†Autism by giving them vaccinations. The rise in communicable diseases is now on the rise because of the ignorance of their campaign. Their fear mongering. It doesn’t help that well-known people in the media will jump on that bandwagon and promote it in their uneducated ignorance. ¬†The viciousness of the attacks from these people is insane in their¬†berserkers rage. Insanity at its purest form. And when I see their comments and their hate in action it brings to my mind visions of straight-jacketed zombies, hissing and spitting and slavering (I have a vivid imagination).

I’ve come to learn in watching the world in their view of and their lack of acceptance of Autism, is that people will search every corner of the world, using all the resources that they can, to find a cause, a reason for what they don’t understand. And if they can’t find a reason for it, they will either try to cure it or kill it.

I find that confusing. It’s something that I will never understand. Why people who work so hard to show that they are different and not like everyone else, that they are unique and one of a kind, will attack that which is different. Why do that if you like being different? Can anyone explain that to me?

I think that will be one of the mysteries of the world. Like Stonehenge.

It’s hard to not get caught up in frustrations and anger at the light it up blue campaigns and autism awareness. At trying to educate people who don’t really want to be educated or learn the truth. All people really want these days is to have their ears tickled with pleasing anecdotes and light-hearted stories of the triumph over autism. They don’t really want to see how many children are suffering from these so called “treatments”. They don’t want to see the pictures of the inside of a child’s intestines coming out of their body from bleach enemas. They don’t want to see another news article of another parent who couldn’t handle their autistic child anymore so they killed them.

But we see it all. From the most verbally eloquent of us to the most expressive nonverbal of us, we see it all. We feel it all.

We want a world where neurodiversity is embraced and accepted and celebrated. Not crush kill destroyed. All I see right now is a world where it’s fast becoming an ‘us versus them’ scenario. And no one is a winner then.

We make jokes among ourselves about the plight of neurotypicalness. Of finding a vaccine to rid the world of neurotypicals. And we laugh at the thought of it. But underneath I’m tired of seeing people’s view of us. Their ignorance. I’m tired of feeling frustrated and angry at the news articles about autism awareness month, of another breakthrough cure/treatment/remedy for autism. Of another child killed by their parents and news media generating sympathy for the parents. Of more and more outbreaks of diseases that had been eradicated because of vaccines on the rise because a dead child is better than a child with autism.

If you really want to know anything about autism, ask an ACTUAL autistic. Educated yourself. It’s not a hard thing to do. If we want to be called an autistic person over ‘person with autism’, respect that wish. For people who often say, you can’t believe everything you read in the paper or see on t.v, you do an awful lot of jumping on the bandwagon when you see something on t.v or read something in the paper about autism.

If you want to really support us, do your research on organizations before you get involved with them. Respect our choices. Don’t light it up blue. As a good friend of mine says, ‘leave blue in your

Don’t light it up blue. As a good friend of mine says, ‘leave blue in your loo’.

As a good friend of mine says, ‘leave blue in your loo’.

 

For more education you can go to: https://www.facebook.com/PlanetAspergiaCommunity/

Posted by Amythest Schaber on Wednesday, March 30, 2016

Community service announcement: Dear organisations jumping on the Autism Bandwagon. You really need to do better than ‚Äúeveryone else‚ÄĚ if you wish to win the trust and confidence of Actually Autistic people. That is IF you truly wish to be inclusive (as you so claim) and learn about intrinsic autistic modalities and paradigms, in order¬†[‚Ķ]

via Autism Acceptance? ‚ÄĒ bunnyhopscotch

Its been a while.

compmat3-00
https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=8&cad=rja&uact=8&ved=0ahUKEwjp35fA0szQAhUFH5QKHSrDCWYQtwIIPTAH&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Du9X-sMeRZcU&usg=AFQjCNFpnQTwIitKRWRTuJjB2TRII8GRBA&bvm=bv.139782543,d.dGo

I have been a busy girl. Its been so long since I blogged and I’ve yearned for the feeling of unloading all the jumble of words that swirl around in my brain crashing into eachother in their deparate attempt of freedom from my skull. But tempus fugid and one day blurs into the next and wam bam thank you mam time as royaly screwed us all over, and, what we thought we had time for we don’t because time is not the concept we once thought it was. But maybe thats just me getting older.
This year alone has been enormously huge with so much jam packed, I don’t really want that kind of action please, action, that as soon as I turn around another three have gone past leaving me wondering if I’m stuck in a demented matrix. The beginning of the year started off with me finally acheiving my dream of being able to home school my son. Something I have been working towards for 2 years.
Then my cat then started his downward spiral. But I’m not ready to talk about that yet.
Another event was starting up our new business. I wanted to find something to help out my family. Being on a pension in this day and age is incredibly difficult. Everthing goes up, but your pay. So when you are struggling to buy enough food to last a week because of the cost of living, you need to find a way to get more money.
Quite by accident the idea popped into my head. With input from others in the service dog community Kobash Mats. By Elle was born (kobashmatsbyelle.com) I now make custom, one of a kind mats for Assistance/Service Dogs, Pets and Babies. And I only make one of each kind so each person has a one of a kind mat that no one else has.
Its been incredibly difficult to get this started. Espcially when you can’t get a loan to help you set up. And verifying my website through bing has been a nightmare. The people with bing are so massively hard to speak to. They don’t understand anything you are saying and only repeat themselve with the same advice suggestions you’ve already told them don’t work a million times. And to top it all off I signed up to run an ad with a $100 vouchure I was sent through bing for poeple to find my website through searches. Which has completely messed up my being found with searches on google. Once the budget for the day is gone no one can find me. And once the entire coupon is used up no one will every be able to find me again. To make it worse, I am right now speaking in a live chat with someone from bing about this, and all he wants is for me is to top up budget so the ad can keep running. Ive done everything but speak in portuguese to him and he can’t seem to grasp the fact that I want to cancel everything and go back to where I was before. When I could type in one of my search words and have Kobash Mats come up in the search. I am right now asking to speak to someone who is charge and still he keeps running me in cirlces.
Still wants me to top up my budget. Not even my saying that within the next 1-2 I will have to pay for a cremation has stopped him. And no, I wasn’t lying about that.
But like I said, I’m not ready to talk about that yet.
Life keeps moving on. Everything changes. Too much changes. And as soon as I come to terms with one of them, another smacks me upside the head and sends me spinning. But enduring changes as an Autistic person is part and parcel of living on this planet. And even in the Autism world things are changing. Moving away from the whole “spectrum” mentality. No more “on the spectrum”. Now, I am Autistic. Getting rid of terms that give the wrong impression of being Autistic. That just because you see us as being “high functioning” doesn’t mean we see ourselves in that way. We each deal with, and handle things completely differently from the next Autistic person.
It is a slow moving smail of progress, but we will get there too I’m sure.

But as of right now, I need a Gilmore Girls sized infusion of caffeine and someone to come jump start my brain.

Updates and happs.

Been a long time since I wrote anything. Last year was a massive year for us. Seems we spent most of it at family court getting stuff sorted out. It was my plan to home school my Asperboy for high school as he was falling through the cracks at school. His anxiety was way up, his melt downs, the bullying. He wasn’t keeping up with the class. And that wasn’t for the lack of him being intelligent enough to keep up. But the class room environment wasn’t a good place for him to be able to.
Unfortunately Asperboy’s dad didn’t agree. He wanted him to go to mainstream school. So this was one of the issues brought up in court. The judge had gave me a month to get all the evidence together in support of home ed and submitted. I got everything I could find minus the kitchen sink. Letters from psychologists, reports from school, information about home ed and its benefits over mainstream, also proof that I was more than capable of carrying it all out and providing my son with a balanced education.

Of course once I had done all the work, Asperboys father changed his mind. He wasn’t against us doing home ed anymore. I think he finally saw how much it meant to my son to be able to do it.

Once Asperboy found out he was able to be home schooled he visibly relaxed. He still had trouble at school and wanted to come home early every day, but he something to hang on to, to keep going. After school let out and he was graduated from primary school, all the build up of anxiety, the bullying, the melt downs and stress finally came out and he came down with a sinus infection that was so bad he almost ended up in hospital. Took him about a month to completely recover.

IMG_0847

Tree Asperboy painted for our classroom

But we started this year off fresh. So far homeschool/unschool has been amazing. Its so rewarding. The amount of stuff that we’ve covered would take a teacher in mainstream half the year to accomplish. Some days he will binge watch the scishow on youtube. You’ll think, he can’t be learning much from that can he? But days later he will give me a lecture on how red giant became a red giant and what happens when it goes supernova. He will launch into a monologue with anyone about the peacock spider. He’s finally learning in a way works for him and its amazing watching him grow into it.
I can’t wait till next term and what comes next.

The Kobash fund

I started a gofundme page in the hopes that I might be able to raise the money to get the extra gear i need for Kobash (my Service Dog) and the extra training to teach him to help with new issues that have arisen. Yay for chronic health. Which is the reason I haven’t been blogging for a while.

After all the too-ing and fro-ing from the doctor and the multitude of tests over the past few years, I’m grateful I finally know what the issues are. Though now is a time for learning and adjustment to new routines and dietary changes…..GAH! So sick of dietary changes! I also know what the issues are with my son, as aspects of his health have been puzzling for a long time. The blessing there is with his age a few changes with diet and a few extra things will help him immensely and hopefully¬†prevent him from getting as bad as me.

Kobash doing a tuck at the doctors.

Kobash doing a tuck at the doctors.

I  have added the link to the gofundme page I started in the hopes it may get around and more people will see it.

http://www.gofundme.com/Kobashdoginblue

What is a black hole?

Daily Knowledge

image

A black hole is a region in space where the pulling force of gravity is so strong that light is not able to escape. The strong gravity occurs because matter has been pressed into a tiny space. This compression can take place at the end of a star’s life Some black holes are a result of dying stars. Because no light can escape, black holes are invisible.

However, space telescopes with special instruments can help find black holes. They can observe the behavior of material and stars that are very close to black holes.

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School Holidays. Friend or foe?

School holidays. Just thought is start this one off on a scream, haha, I kid. So many people dread the though of school holidays, I don’t so much, Even with a child on the spectrum and anxieties and melt downs and tantrums, I still don’t mind them. Maybe because I only have the one child, I don’t know. But aside from the fact that mornings are always…..GAH! The rest of the day (once the medication has started working) is better, (I do Love my boy, and he is a boy bordering on hormonal changes and adolescence) and he can focus better. I agonized over the whole medication thing. I didn’t want to have to go there unless it was absolutely necessary. I tried everything else first. Teas, tinctures, drops, homeopathy, naturopathy, the gf/cf diet…… The diet though is something we have stuck to as he is allergic to gluten and dairy. Those things do make him sick. Finding that out was such a blessing. Before he got on it, he was all over the¬† place, aggressive, biting me, kicking me, you name it. Along with the physical side effects that those foods were giving him with high fevers out of no where, explosive runs, constant congestions and colds and flus, having his tonsils out¬†because they were that scared up they were like an old mans. It was torture seeing him sick all the time. When I found out about the Gluten and Casein free diet by pure accident and chance, I thought it would be good to try it out. So I did. The book said that if he turned out to be intolerant of gluten and casein then he would go through withdrawals from them like an addict off heroine. And boy did he. For a week he was sick with a temperature as it was coming out of his system. But after that week, what a difference. His aggression stopped. He stopped trying to hurt me, you could¬†actually talk to him. The change in his behaviour was such that even his school asked me what was going on.¬†They would tell¬†me that he was doing better in class. He¬†also stopped being sick all the time. That was about 3¬†or 4 years ago now. Since then he has had maybe 1 or 2 actual colds or flus. He just doesn’t get sick.¬†The only time he does is when he has eaten something he cant have. Usually when he has been at his dad’s. He¬†also started trying new foods which he wouldn’t before. He would only ever eat cheese and¬†bread.¬†While the diet is restrictive he never misses out. He still gets chips, lollies and cake, ice cream etc. Its just all gluten and dairy free. I’m on the same diet. And yes I so miss cheese cake. But I’m allergic to all that stuff too. Sigh.

After the diet we also tried the alternative stuff like the tinctures and teas. The local health food stores know us very well. In the end his melt downs and the troubles he was having at school made the final decision for medication. After meeting with the school and talking to support services. AsperBoy would have melt downs in which he would trash the support service rooms, pick up benches and throw them….. All from anxiety and over load. He would be tortured afterward, and in tears and so sorry. He couldn’t control himself. He couldn’t settle in to (By this stage his new school) the school and the class room. He was terrified of even going into the class room after all the bullying he copped at the last school. So after debating it and going over and over it we went to the paediatrician. It took about a year or so to get¬† steady on it. Adjusting the dose and all that.¬†But¬†he is doing much better now. He still has¬†anxiety, but we work on that together with his psychologist. He loves school. Loves learning. They have worked so hard to help him. And he¬†has improved so much. I love reading the comments on his report cards. Always so positive. So while I would have much rather have not gone down the medication path, I cant argue with the results. Mornings aren’t easy. Its very hard to get him to focus and eat his breakfast (it can take an hour for him to eat a piece of toast) get dressed (he does everything else but) brush his teeth…… But when he is focused he draws wonderful pictures and detailed pictures of the butterflies he loves (including descriptions). I would have to say that¬†is the downside of the ADHD part of AsperBoy. Having to take medication. But I love my Boy. He is creative, intelligent, witty. He is caring and thinks about other people. He is polite. And funny. So I do enjoy our holiday time together. He just loves to be able to sleep in ūüėõ Its still important to stick to some kind of routine though or he isn’t settled. He doesn’t know what to do. If he doesn’t have some kind of activity or job to do he¬†is all over the place and anxious. These holidays though are going to be pretty sedentary. Which wont be fun for him. But he hurt his knee at school, and until we find out what the MRI and xrays say is going on in there (with the possibility of an arthroscopy) he isn’t allowed to be on his feet much. So stock him up with books, dvds, loom bands, pencils and anything else I can fit on his lap. He is already going slightly mental. Mine left ages ago.

Over it and out.

IMG_20140430_090701

Always has a hug for me.

 

Its finally been torn. I’m am so over my car now. I have decided that even though I don’t know how, why, which, where or when, its going to happen, but that car is going! I’m tired of getting a concussion when I open the boot. Of not being able to lock it because it pops back open again. Of not being able to closes the doors without slamming them. Of not being able to start it without pushing the button to kill the kill switch which doesn’t work either. To say id been conned into buying would be obvious. At the time, I had sold my van and needed something to drive around in. And still in single Mum status, so I needed wheels. So even though the niggling thought in my mind was telling me that they took our offer WAY too fast, I still bought it. And I’m suffering for it now. Oh how I love the burning rubber smell when I’ve been driving around for a while.

But…..BIG but. Unless I suddenly come into some money, or the dollar¬†I planted in the backyard decides to grow roots, I have no idea how I’m going to turf this car and get one that works. One that we can take to Melbourne with us. One with a functioning air conditioner. That stays locked when you lock it. One big and roomy……..sigh. GAH!¬† At least today is better than yesterday. Then again actually getting some sleep WILL make your day brighter. I’ve so sleep deprived of late. The little that I do get has been non existent for days. I was about to go mental. Its hard enough dealing with hyper senses and stress without being¬†a nut job¬†from lack of sleep.

Kobash today has been on the ball for me. Hubby and I were having a conversation with a friend outside their house, when a magpie flew down and started squawking at Kobash. With that bird going at it, along came a flocks of butcher birds to join in. All focused in Kobashs direction. My hands were over my ears to try to drown out the¬†sound, which as anyone with heightened hearing¬†can tell you does jack squat at actually blocking out any noise. I was desperate for¬†it to stop, and Kobash came to my rescue. He looked at the bird that instigated the raucous, and¬†headed straight for it. All he did was do the heeler stare and make two steps, when the bird took the message and flew off. All the rest of the birds in on the action also flew off. And then it was very quiet. ALL the birds in area had gone off with the flock that took off. Kobash, a look of satisfaction¬†on his face, moved back to my side and laydown. I love that dog. I love that he is there when I need him in situations like that. Right now he is having a well deserved break. After he had his¬†meaty treat he parked it on the mattress on the floor next to Nova, and fell fast asleep. Nova¬†got her treat too. I never come¬†home from being out¬†with Kobash without giving her one too. I always feel bad that she has to stay at home while Kobash comes out with¬†me¬†everywhere.¬†I’m so glad I have someone who loves Hounds and Loves Nova that will look after her while we’re all away in¬†Melbourne. I’m sure she will get spoilt rotten. She will¬†go off all packed up with her food and treats, and¬†faux fur blanky (that I’m buying for her next month :)) and her comfort coat and calming spray. This will¬†be the longest time I’ve been away from her.¬†And the cats too.

But right now I think I will go and have a nap. Still trying to catch up on sleep.

Changes? No. I dont like changes.

Sleeping puppies

Sleeping puppies

 

 

How do you handle sudden changes? Myself, I don’t handle them well. Even what would be seemingly simple to a Neurotypical, can be outstandingly humungous for an Aspergian. The day didn’t start off well. Waking up to full body cramping mostly focused in my back and radiating outward, is becoming all to frequent. Restless sleeping with tossing and turning and more pain. I prefer to sleep¬†with white noise in the background as it helps me to sleep better. But having a fan on in winter is not the best idea. Way too cold for that. So I hear every noise, every breath from the Hubby sleeping beside me. The sound of AsperBoy talking in his sleep from the other side of the¬† house. All coalesces¬†into a cacoon of noise that prevents me from getting any of the rest my body needs.

So grateful  had two cups of coffee this morning.

The dang car with its myriad of problems, failed to start for me, so I found myself stuck outside AsperBoy’s school for 30 minutes till I could get the remote to work, enabling me to push the button that would kill the kill switch so I could start the blasted thing. So its off to the mechanics again this week to have the kill switch deactivated. I’m beginning to think its a waste of precious time. I would rather have a new car. Id rather have my dream car, but that one is to stay in my dreams. mmmmmm Jeeps.

So once I was home, I set about to take care of things that I needed to take care of here. Pre-study done, Tablet research done. The preliminary list for the Melbourne trip done. Dog vomit cleaned up (thanks Kobash). Then I get a call that upsets the lunch time routine. Trying very hard to let it go. Things will happen sometimes. Things that I cant control. But I still cant help the negative feelings, the agitation, the GAHHHHH. Just from a mucked up lunch. Ridiculous yes? Yes. Missing out on lunch time coffee. But glad I did have the two for breakfast. Its all routines. Messed up routines that cause the agitation. I cant help it. No matter how much I try to reason with myself, tell myself that I’m being ridiculous, the Aspie in me takes over and I find myself bordering on a melt down. Trying to find alternatives. Thinking I need to have backups in case of emergencies.

Slowly trying to implement the ideas from the Asperger book I read. Trying to get myself more organized. Its a mammoth job I know. But I know that If I can do it, then I can be a better example for AsperBoy too.

Sleeping Dogs on the mattress on the floor beside me. Nova gets up to have a stretch. Cracking bones, turning turning. Settling, and a big groaning sigh as she lays back down. Kobash meanwhile sleeping through, flickering eyelids as he dreams. I wonder what he is dreaming about? Playing chasing with the other dogs at the park? Or chasing a reluctant Nova as she runs away from him? Poor Nova. She cant even pee without him trying to play with her. Yes I’m laughing.

Hopefully the rest of the week will go according to plan. Big Thursday as usual. Then the blonding on Friday. Coming up with ideas for AsperBoy and I while he is on school holidays.

Changes? No. I really don’t like changes.