The possessed potato

My "so" called life

The System is Down and its Toxic — March 7, 2017

The System is Down and its Toxic

I never knew I loved rock/death/that metally music until I met my (then un diagnosed)  aspie other half umpteen years ago, and its kind of grown on me.. Being classically trained my brain didn’t really want to make sense of this seemingly just noise based AAAAARRRRRRRGGGGGHHHH stuff that was coming out of the speakers (old school, you know, a proper stereo, i am 38 so i have an excuse). I thought my eclectic mix of Wonderwall to the Spice Girls to Mozart was just perfect back in the day..

Once I really listened, like really listened to some of the lighter styles of stuff (think the likes of Metallicas “Nothing Else Matters” and Stainds “Its Been Awhile” I really began to hear things I hadn’t heard before, beat, drums, guitar, melody, lyrics… Actual music to my ears as it were.

I then moved onto some of the harder stuff. Machine Head for example, well, I never thought for one day that i would love any of that! But I do, and I now totally understand the words behind the songs, the beat, why this type of music full stop exists.. Everything it actually means and wants to say if you listen fully, take a step back and really HEAR it.

I have always used music to relate, equate, rationalise, cry to. Its my go to.  I was very open to change as well. Something I see so much the people I live with who are on the spectrum struggle with.  Looking back at my own kind of rigid thoughts about deathy rocky metal shows me that we all struggle at times with this kind of set in your ways attitude so why do certain professionals become that way too… Its almost like if your names not down you’re not coming in. Why is it called a Spectrum when there are boxes to tick and criteria to follow? Having one “obvious” child and one a little more complex this perplexes me wholly, along with how easy it was for my other half to get a diagnosis at the ripe old age of 35.

That professional who says your child is “fine” because they do not fit the “criteria”… I think they need to listen to some kind of music so outside their “box” just like i did, that they see and feel what I did when it clicked.. I don’t fit the criteria to like rocky deathy metally music, but I do.

The system is down all over the world when it comes to parents being heard about autism and sensory processing issues and it is so very toxic to every specific person dealing with it along with their families…..

We have to constantly fight, perhaps that is why the music clicked with me… as the AAAAARRRRRRRGGGGGHHHH sound I used to hear from that music is all the noise I seem to want to make and have to make these days, both internally and externally when it comes to dealing with the tick box brigade..

When i get to rock bottom I listen to Rage Against the Machine Killing In the Name  *disclaimer i am NOT going to kill anyone….. this song reminds me alot of our demand avoidant daughter!!

The system needs to up its game so it isn’t toxic anymore….. it really is killing in the name of parents just so tired of being held at the master of puppets ball.

Nothing else matters but getting the support your child needs and knowing that there is someone out there that feels you, lives like you do sometimes and when it does get tough go listen to some AAAAARRRRRRRGGGGGHHHH then start all over again 😉

 

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A Letter to D — July 7, 2016

A Letter to D

 

This week I told you that from now on, it is time to act upon the fact I am unhappy. I have told you, kindly, politely that you need to do things for you, I have kindly and politely told you my needs. That this is about you showing me how much you are prepared to do/fight to keep us together as a couple.

Its now been three days since I said that, and so far I have had “well its money, I haven’t got any” or words to that effect. Yet again barriers put up by you. I’m not interested in barriers I told you. I think that fell on deaf ears too.

How long should I wait for some sign that you are going to step up? Going to leap up and realise that if you do nothing you lose me. perhaps losing me is what you need. Although I doubt that. Looking back over our years together you have done nothing to fight for me so why would I think you will now? I’m not sure really.  But I guess that shows my faith in change, a testament to my resilience, a testament to how much I care about us.

I also politely told you that your oldest daughter knows not to critique or upset you in a confrontational manner because she has seen how you react. And that you are stifling our emotions and that makes all of us sad.

That wasn’t enough to make a phone call or two, or use google for yourself.

I have carried you, i acknowledge that, to the extent you lean on me for everything, even the mundane. Trouble is I’m not a robot, and if i was i would be on the scrap heap right now.

You are capable, you even see that for yourself. When you tell me you would have to do things if we lived separately, it shows me you CAN do them, i am just allowing you to be lazy and disrespectful towards me and you are being massively disrespectful not seeing what a great person i am, or if you don’t think that, move on . And the point of this weeks revelation from me was to explain that that is not going to happen anymore. The only time we communicate is when i initiate it, or when you want an answer. Bit like our sexual relationship.

Its a sad shame that you do not see me for what i am. A great mom, a caring partner, an autism advocate who multi tasks autism and “normal” kids whilst juggling an autistic man whose only comment towards me about that fact was and still has been (pretty much) “there is nothing wrong with me, i don’t think i even have aspergers”

I am frightened of the future, but not for my kids, or their relationship with me, im frightened that once they all leave home, i will be more alone within our dynamic than i am now.  So yeah, maybe i am having a little midlife worry over what my future looks like, rightly so i would say.

And rather than appease my worry. You sit and do nothing.

You will still have issues parenting whether we are together or not, sometimes i wonder if you are deluded in that sense? That not being with me, suddenly you wont be falling asleep, leaving doors open, not understanding autism or sensory disorders. I know your excuse has been “well i will sleep all week” , sadly i have seen you have copious amounts of sleep and still not cope how you should.

It really isn’t that difficult to suck it up when it comes to you time, you were offered it. Truckfest. Even after you ignored me for 2 weeks with a then 3 week old breastfed baby and 4 other children. Not so much as a cup of tea was made for me and i am sure your pretty proud of the fact you admitted that, but sorry that shit doesnt leave someone without some action to the contrary, yet i still chose to give you a chance this year. You don’t like people knowing what a dick you can be as much as you don’t want people knowing you have aspergers. Are our children to grow up thinking that its shameful? Definitely not. That’s your issue. One you should want to deal with, as its a massive one. One i have tried to help you deal with but will not anymore.

I wanted answers as to why you are the way you are, when I got them and realised that certain things I may never get, it was a dark time for me. But I learned about it and got on with it, focusing on what you could do. You have not done the same.

I am not sad anymore; I’m not sure what I feel. Numb. Probably. The one thing I worked massively hard to overcome, that I now have reverted back to.

You have not supported me through some very tough times, in some respects I understand your limitations, but therein lays the key, I KNOW the limitations in general terms of those with an aspergers diagnosis. So when I take those into consideration, I still see how massively let down I have been by you, and even when pointed out to you. The effort isn’t there to make things right.

I’m not usually wrong; my prognosis is you can’t be bothered. Or perhaps I have helped you that much you expect me to be bothered for you. Unfortunately for you, that is not going to happen anymore. I want to grow old happy, not settling for someone I have taken years to understand, nurture and help. I did that for me and it was hard work, hence I am happy to be on my own if needs be as I worked hard to feel comfortable that way.

J’s issues, the meeting with the health visitor and the referral have shown me, along with you giving wizzle hugely contradictory parenting, that I am not going to parent you anymore. You are an adult, aspergers or not. It is time I took stock. When you know you are actually causing someone pain, you do something about it, especially when you have been given all the tools so that you can, and I have. Burying your head in the sand has fuck all to do with autism…………………. sand.jpg

Optimistic about Autism?? — April 30, 2016

Optimistic about Autism??

I always wanted to be like my dad, or at very best meet a man who could fulfill the love I had for him as a child. It may just have been the fact he did not hit me, but nonetheless i felt that.

I remember the conversations of “you will understand when she is older” she is older, 13 now. At 13 I had been sexually abused and used so much, i thought i was loved if someone wanted to have sex with me. I now know that is child abuse. my therapy showed me that. something that taught me to over analyse everything………

My dad 8 years ago, told me I am too much of a pessimist and after my therapy that i analyse things far too much. So i tried to become the optimist he wanted me to be.

Trouble is optimism doesn’t work very well living here.

I was optimistic that when I dropped aspie man off at the doctors door, he would go in (not run out of the fire exit, 6 years ago, and me be too scared to be rejected to ask him what happened)

I was optimistic that when I finally got aspie man to a doctor, he would get a diagnosis. this part did happen.

I was optimistic that we would get support as a couple

I was optimistic that my family would be supportive

I was optimistic that channeling what energy I have left i put into helping aspie man

I was optimistic that aspie man would see the help i was giving him and how much i have carried and almost nurtured a 30 odd year old man, supporting him.

I was optimistic even when 18 months later aspie man has done nothing for himself

I was optimistic that I might get a “well done” for breastfeeding our fifth baby to now nearly 14 months old.

I was optimistic our daughter would get the support she needed and still needs.

Yesterday all the optimism i had left , went. I realised i have actually no one. i was ill, really ill, no deathly illness but i am a trooper and i saw that, my children are my helpers. I absolutely hate that. aspie man, cared more for himself and his job, even though he was ill himself and he doesnt seem to hate that?? Does he live in his own optimistic world, or do i create that optimstic world for him by facilitating all his needs, whilst barely any or mine are met?

I thank my dad for asking me to try a different approach to life, its given me the chance to try all sorts of ways with aspie man, unfortunately as the adage goes you can take a horse to water but you can’t make it drink.

I told aspie man the other day that it’s over that I was emotionally done, exhausted. his reaction. Answer phone to friend.

I am not optimistic anymore.

 

That thing….. — April 9, 2016

That thing…..

Today , i got told that me and and our oldest have “that Thing”…….. by her dad. I cried and realised that “that Thing” is love amongst other things…….

Today was a great day, our “non” NT daughter had a party, was a fabulous day.

Today i realised that high functioning autism is not the end. Its bloody great, awesome even.

Today i told my other half that Thing he is missing out on is love and mutual respect.

Today i realised our 13 year old daughter has no realistic bond with her dad.

Today i accepted that my life is pretty much a myriad of messiness, literally and physically.

Today i saw that my 3 year old has his dads genetics, sensory overload to name but 1.

Today i felt comfort in a friend.

Today, our son asked why his dad is obsessed with lorries.

Today was stressful.

Today i didnt sleep last night.

Today, i am looking out for tomorrow.  blogface

Breakdowns, Bonds and Genetics — April 1, 2016

Breakdowns, Bonds and Genetics

Our 9 year old isn’t “officially” diagnosed, we went through the CASBA team assessments when she was 3 (uk), she also saw a clinical psych for one hour who, to be honest i felt led her answers.

She and i didn’t have the greatest start to mother daughter bonding, i had an emotional breakdown when she was born, she was nurtured, cared for but i felt empty and non attached up until she was 5 months old when i started psycho dynamic parent infant psychotherapy (therapy where the baby is in the room). I randomly fell upon a tv crew looking for mothers with attachment issues as my gp was useless and just wanted to dose me up with anti depressants (nothing against them, just knew some where in my darkest depths they would not work for me). Transpired i was right, as, my breakdown was due to my daughter being premature and very “needy” something i could not deal with due to having to be very self sufficient from a young age.  My mother was, and probably still is an alcoholic with a personality disorder and she mentally and physically abused me when her and my father split up, although even prior to that she was never a “loving” parent, i dont recall ever being kissed or cuddled or told i was loved by her, the best way i can describe her is cold. I have, thanks to therapy cut that vicious woman out of my life for good. It was very painful letting go of, and grieving for someone who is still alive, especially your mother.

Now this therapy was technically “private” even though it was made into a documentary, there are no records on my medical file…..

When our daughter was first seen by a paediatric consultant her automatic thought, from my observations (i was at the time a pre school supervisor who has done SENCO training) and our daughters nurseries observations (many issues whilst at nursery, thank god she went to a fantastic one, who “coped” with her beautifully, i recall crying on graduation day with the manager asking if she could just stay there, school would be too much for her to deal with!) was that aspergers was a definite possiblity. The twirling, walking on tip toes, obsessions with certain clothes and routine screaming if i went the “wrong way” to nursery on foot or in the car, the obsessive picking of scabs, toe and finger nails, sleeping roughly 3-4 hours a night to name but a few.

On the next meeting with this consultant we discussed general things like my daughters birth and any after effects. I proudly spurted out everything we had been through and over come together, 40 sessions of therapy over a year, but i must add that the bond was found and overwhelming less than 8 weeks into therapy, the rest of the sessions were myself dealing with my fraught, traumatic own childhood that i had buried for many many years.. I was and am so very proud of what i did, it wasn’t easy.

From that point on, it was never “openly” brought up by any professional we saw, but i knew from having gone through the natural guilt stage “is it me, something i did” that the proffs considered my daughters “issues” now to be attachment based… i have researched attachment theory, infact even before our daughters dealings with professionals i researched it for the SEN part of my supervisors training, so i am well versed on how it works. Our oldest daughter is 13 and through therapy i realised i had kept her at “arms length” as it were, so the attachment theory for my families dynamic just does not work.

We had a diagnosis of complex child, are not all children complex?

I wholeheartedly agree some children will have major problems if they feel no attachment and it is not dealt with. Ours was, very early on.

7 years later i have not revisited the said paediatrician as i have no faith in her whatsoever. But i will be, i have to.

Her father was diagnosed in march 2014. We have been together 15 years, he recognised at a seminar on ASD and aspergers in 2009 that the clinical psych running it could basically have written the whole seminar about him. I was so thankful he had seen that, as i saw it immediatly. I took me five years to get him to attend a gp for referal, the first appt i dropped him off and when i left he walked out the fire exit… classic social anxiety, not just a “man” thing it transpired..

We have 5 children together, and our soon to be 3 year old (tomorrow!) has massive spectrum traits, some serious SPD traits as well, also has a very bad sleep pattern (basically doesn’t sleep, very much like our daughter).  What do i do? Is a diagnosis for him important when i have no choice but to revisit someone i have no faith in, and she is my only “choice”??

It is clear to me that Autism is genetic, looking back at my partners family history it is obvious.  I was terrified when our 3rd was born, watched him like a hawk, little quirky bits but nothing as “extreme” then our 4th came along… He is so similar to our autie girl. But a totally different birth and bonding experience… she was born at 33 weeks emcs, he was born at home (planned) term…

I do hope i at some point manage to muster up the energy to go and ram my partners diagnosis up the paediatrician arse along with the diary i have kept for 8 years of our daughters “quirks and meltdowns” and the story of how it isnt crappy bonding that creates genetic differences it is just that, genetics…….. It should not be this way though that people like me have to fight to be heard, my daughter is only as well rounded as she is today thanks to me seeking knowledge on autism. She was sent to try me in the most marvellous sometimes horrendous ways. She is my autism awesome. She is why i am who i am today.