Sunday, 19 March 2017

When does accommodating become enabling?

Before you jump to conclusions, our home is an autism friendly household. We have trampolines, wobble cushions and exercise balls galore, sensory toys in every room and we pride ourselves on having relationships built on mutual trust and respect. Accommodation is something we have DOWN.




That being said; at what point do those accommodations, by which I mean any of the things you or I or any other carer of a person with additional needs do, consciously or unconsciously, to adapt the environment to fit their loved one's or their own additional individual needs, become more of a hindrance than a help?

To start, I'd like to take a look at the difference between short term and long term aims. This could be applicable to most situations, any person (including you, the reader). Often, I find my short term aims are actually interfering with my long term aims.

For example; in the short term, I'd like to clean the house as quickly as possible so I've time for other jobs; perhaps pursue some leisure activities if time permits. Long term, I'd like housework to be at a level in which I can keep on top of it without dedicating whole days to cleaning one room and without having periods in which it borders upon uninhabitable.

The short term solution would be to do a quick, sloppy job and leave the things that can wait until later. Then later comes along and I'm still struggling to juggle time, so I do the same thing the next day. It becomes a cycle that ends in me having to spend hours, days, WEEKS even, trying to sort through all of the jobs I left 'til "later" and I begin to feel negatively about cleaning anything at all, as it seems to take so long and it's such an enormous task each time; and the bits I do in between don't leave me feeling like I've really cleaned at all, it's more like a band-aid, with the pressure mounting each time).

To focus on the long term goal, I'd need to dedicate some serious time first to focus on cleaning each and every room in it's entirety, then schedule time each day to keep on top of daily tasks and tackle the larger cleaning projects on set days of the week. Turning this into a regular, predictable routine helps prevent mountains born of procrastination, eases anxiety around starting new tasks and keeps the household running smoothly, leaving me physically and mentally free to take on new projects.


Image courtesy of Good Housekeeping

Leaving behind the cleaning analogy; each time we forget the long term goals, for ourselves or our loved one (to be able to make healthy/good choices, to learn new skills, to work on distress tolerance and personal safety, anything to get to the point of being able to experience the world and all of the adventures you know are waiting out there) and focus on the short term (keeping them/yourself calm or happy at all costs, making things "right" or fixing everything instead of simply "making do", getting through the day without tears), the long term goals begin to slip beyond reach.


Image courtesy of cpeay at photography-on-the-net

There's a fine line between making our loved one's lives (or our own) less frustrating by letting things slide, avoiding conflict and giving into pressure or guilt, particularly when faced with a situation within our control, and holding them or yourself back from developing vital coping skills and learning to accept situations for what they are.

You can not control life. Life can be unfair, life can be cruel and there are absolutely no guarantees... aside from death. Death, as it turns out, is a subject I've dwelt upon quite a number of times now. With 5 children, a partner and both of our respective parents still living, I'm almost certain to lose at least one of those people in my lifetime. Then there's my own death; I could be a walking timebomb and I wouldn't know it. I could die tomorrow, or 50 years from now; I could even live to be 100.

Without guarantees, though, I'm stuck with the knowledge that I could leave our boys behind; sooner rather than later. Who would do what I do for them? Who would know them so well, read them like I can? Who would bend over backwards for them, the way only a parent could? I have no way of ensuring that what they experience and expect from life right now will continue to be. How could I, or anyone, know a future that exists without them?

So, I consider this and I know that those long term goals are important, for them and for me. I know that, as much as life is about enjoying the moment, that's not all there is. We need to move forward; it's who we are and it's how we thrive. Stagnation brings about an awful pain, lethargy and a loss of lustre for life. It disables and limits a person in a way that's almost impossible to break free from or accommodate. The longer we stand still, the more rigid our lives become; the more fears and compulsions control us. The sick thing is, it lulls us into believing we're making the right choice; it soothes us into a false sense of security and we begin to depend on meaningless rituals and cling to our safe places like a comfort blanket; we become imprisoned by our own minds.

Image courtesy of Blacksmiley at Art Corgi

That same trap can also await children; although routine can be helpful in creating stability and improving memory, absolute rigidity around routine and rituals can teach a person to have unrealistic expectations and become increasingly dependent on the world inside their home, where things are predictable. It can intensify the belief that rituals keep them safe. It can confirm those beliefs, even. If the whole world stops for you when you say you need to compulsively count the tiles, is it accommodating you or is it agreeing and further perpetuating the belief you already held that you NEED to count those tiles to feel "right" again. The mind is a powerful tool. OCD can be absolutely crippling and, the more you act on the compulsion, the stronger the belief becomes that it helps and the more vital the ritual becomes. Can you see where I'm going with this?

Just this week, a fellow group member on a popular Facebook group for parents of autistic children began a post expressing her frustration that some parents of autistic children seemed to use their child's diagnosis as an excuse not to hold them to any expectations whatsoever and allowed their children to harm others, be rude/verbally aggressive and not intervene. Many people agreed, arguing that autistic children may need to be taught differently, but they can be taught basic rules at minimum and wouldn't make any progress if they weren't allowed the chance to work through their feelings and learn about boundaries instead of being left to it. Some disagreed vehemently and made assumptions about the poster's experience with severe autism, criticising her opinion's as being ignorant. 

A comment on that thread jumped out at me; written by the lovely Nona Melkonian, with whom I had the pleasure of chatting with in the group and who kindly agreed to allow me to share her story, to put it far more eloquently than I could:


"I made a post about this several months ago. And I'll admit, I was this parent for a while. Here's my previous post:
I've been spending time and growing closer to a friend of mine who has a child with special needs. Her boy is 9; older, has a slightly different diagnosis than mine but is, too, on the spectrum. He is a very sweet and fun loving guy and, despite the 6 year age difference, loves to play with my son. They get along beautifully and the two of us mamas have been getting along nicely, too. Well, until recently. 
She made a comment to me during one of our play dates with our boys that I found offensive. And now I am beginning to wonder whether my reaction to it was premature and if I was being overly sensitive. And perhaps, she may have even been right. Unsolicited parenting advice from strangers or other parents can be annoying, but parenting advice from another special needs parent is golden. And yes, we all parent differently and our kids may be on the opposite ends of the spectrum, but our journeys are similar. We all struggle, we all advocate, and we all celebrate those small victories. 
Here's what she said- "Don't baby him so much. You really are at his beck and call. You've got to see him for what he is, and not for his disability". Immediately, I got flustered. "I don't see him as a disability", I reinforced. We were quiet for a moment. Several moments. This was when I expected her to apologise. She didn't. Instead, she began explaining further. I'm not sure what she said because at that point, I really wasn't listening. All I understood from the statement was that she questioned my love for my son. And she didn't understand my journey or my struggle. Now, I am beginning to question that notion. And maybe that's not at all what she was saying. And maybe she was even right. 
I give him excuses. I give him passes. And I shiver and shake at the sight of every trigger, desperately attempting to avoid the meltdowns. "I want a lollipop, mommy. No. I want the red one. I want the red one!" What usually happens next is meltdown city. He loses control of his body and seeing him in this broken state hurts my soul. I try my best to remain calm, but I die inside. My heart beats a mile a minute and my brain scatters about everything I need to be doing differently to fix it. Where the hell can I get the red lollipop? I need the red lollipop now! 
This is wrong. All of is. And my friend, with nearly a decade of special needs experience, is right. Maybe her delivery was wrong. Maybe her word choices were poor, but she was right. We can not be at their beck and call simply because we want to make their lives "easier". This approach will not make it easier. It will make it harder for both them and us. They will become more rigid in their ways and grow completely dependent on us, and we will live our entire lives in fear. Fear of the meltdown. Fear of the "oh no, it's happening".
Well I refuse to live in fear. I refuse to see my son as a condition. He is very capable and very smart. And I am guilty of making his life too comfortable. I do this because I don't want him to struggle any more than he already does. And that is simply not the right approach. The right approach would be to give him that gentle push. The same push that he got in speech that helped him speak. The same push that he got in ABA that helped his behaviour. The same push that he got in OT that helped him adapt to different stimuli. 
With that gentle push, they are better adjusted to this big world. With that gentle push, they are more confident in themselves. With that gentle push, they thrive. 
Calling my friend now to apologise and let her know that she was so very right."




So, where do you draw the line?

Friday, 14 October 2016

Division of the "Autism Community".

I have to be honest here; the vast majority of parents aggravate me in ways that can't be healthy. By the same token, as do some of the autistic adults I've "met" online. Our shared diagnosis does not automatically enamour me to my fellow autists and, as much as I'd hoped to finally find a group of people I could connect with and find some mutual understanding, it simply isn't working out that way.

As a parent/step-parent of children on the spectrum, ranging from a non-verbal and... what's the politically correct term here? Severe?* Profound?* So flappy we have to make sure he's got air space lest he take off?* 6 year old to a highly talkative, very sociable and far less obviously affected 7 year old, with an echolalic 4 year old and speech/language delayed 5 year old somewhere in the middle, you'd assume finding parents in similar situations, with whom I could talk autism with, would be easy.

*Please note, these labels are simply a jesting/less serious way of pointing out the difference in development between the boys; L has a range of co-morbid conditions that would place him in the "severest" category in terms of medical diagnosis. We tend to steer away from functioning labels but in this instance, I was trying to make it clear that we experience the many variants of an autistic spectrum disorder, not just one "subset". As it stands, L needs the most additional help to cope in our world and is as yet unable to communicate basic needs to unfamiliar caregivers or more specific needs to familiar caregivers. Our other boys have different additional conditions that make them all extremely unique; not to mention the fact that their personalities are all different to begin with. Of course, they're all just as autistic as each other (or myself!). 

Though there are a plethora of us (parents/caregivers) out there, on the boards and social media groups, almost all of the interactions I see between folk on there quite literally leave me with the urge to scream as loud and as long as physically possible. Thankfully for my family and neighbour's sake I've taken a major step back from the online world, barring use for research purposes of course.

From those who believe their child is a diseased burden who requires daily bleach enemas, to those who believe their child is a misunderstood genius who's behaviours should be accepted no matter how alarming, distressing or aggressive they are to other people (which includes others with additional needs) and every problem in between, no matter how bloody pedantic (I'm looking at you, identity
-first vs person-first - how about we all just go with whatever the autistic person in question would prefer?), it's a minefield of delusion out there. Add in the parents who use their children as Like-Bait, entering either their child or themselves into beauty contests and using autism to gain sympathy and attention, and you're left with very little actual advice and support going on in these so called support groups. 


 Considering my diagnosis highlights the difference in thought, specifically my "black and white thinking", compared to that of "typical" folk, it amazes me how so many allegedly "typical" people seem to see the world and it's many conundrums in an all or nothing, black and white way.

Of course there's only one cause for autism, and it's *insert cause of the month*.

 Of course all autistic people should be called autistic (or vice versa, each person who has autism should be informing people they have autism). 


Of course my child should never be corrected for his behaviours (or vice versa, of course my child should be constantly corrected, fuck self esteem). 


Of course the reason my child didn't receive an invite to the party is because he's autistic and people just don't understand!


It couldn't be the multitude of other perfectly reasonable explanations, could it? It couldn't be a simple error in memory, or a lost invitation, or a limit on children, or simply that the child in question doesn't particularly get on with your child? Not because he's autistic, but because that's life. Not everyone can get on with everyone. Some people clash - children are NOT exempt from this. Who needs an entire class of friends, anyway? How many people from your early school years are you still close with? But I digress...

That's just a small taste of the frenzy of strong opinion and rigid thought occurring daily within the caregiver groups. Now let's move on to the (I must agree, far more rightfully outraged and generally more in the know) group, the autistic adults and young people (or those with autism, for those who like that) of the internet.

I feel some shame and sadness admitting this, as I'm overly aware I'm talking about people who most consider to have a disability, but a large percentage of this group have also set off triggers in my ever-ready to implode mind. As a parent, I understand the toll having any child attempt to rule your life, let alone one with various additional needs and the strongest will in the world to boot, can do to a person. As a daughter, I understand my parents were, at times, put through a living hell raising me. They had no answers or doctors to tell them what was different, just noncommittal ideas such as mood disorders or anxiety. They did the best they could, they made mistakes and, as a teenager, I held onto those mistakes. As a parent/young adult, I've let (most of them) go.

As a parent, particularly as a parent on the spectrum, I've made awful, lifetime of guilt inducing mistakes. Lots of them. People often ask me whether being autistic gives me a better handle on parenting autistic children. My answer is almost always the same; it means I understand where their behaviours come from and how they're feeling (most of the time) as I have the same mindset and many similar behaviours. My actual reaction, though? I always aim to be fair, calm and understanding. More often than I can bear, my reaction is stern, snappy or hysterical. Every day is a new day, a day I try to stay calm because that's what they need, and what I need. To that end, I understand when a parent of a child, whether said child is on the spectrum or not, has to vent to another person about their delightful wee beastie breaking the family dog or smearing on the TV again. I even understand when that parent shouts at the child, not because I agree the child should be shouted at or punished per se, but because it's an impossible ask to expect a human being to be calm and reasonable 24/7 in the face of a 5 year old expert in *psychological warfare.

*Note, this is intended as a joke; anyone seriously considering their 5 year old is a master manipulator or difficult for the sake of it probably needs to take a step outside, breathe some fresh air and screw that head back on properly ;) behaviour is communication, as they say! 


So when I read posts from largely childless autistic people chastising parents and caregivers for needing space to vent about their life (considering most of those with this line of thinking find the child screaming their frustrations out acceptable, is it not the parents right to vent their emotions too?), or for admitting they lost it/punished unfairly, when all the experiences the accusers have are being the child, not the person with all the responsibility in the world on your shoulders, it angers me. I absolutely understand that it's so hard to fully comprehend feelings and situations that you personally haven't experienced yet for many people on the spectrum, so I get it. I get why you can't always see the struggle on this side, but it doesn't make it any easier to take.

As much as I love hearing the views and thoughts of my fellow autists, and as much as I agree with most of their points, how some of us (myself included) speak to others is creating just as much division as the "NT" caregivers' accusations that our ability to speak/communicate online makes our thoughts and ideas invalid and not pertinent to their "low functioning" child. When we expect each and every person to accept and love us for who we are, we seem to forget that the person who was rude or aggressive to us this morning may have their own battles, be it ASD or mental health or other neurological condition causing personality changes or aggressive behaviour. They could simply be anaemic and their body and mind worn out! But, instead of taking all this into account, we make the assumption that their reaction, or lack of reaction, is directly related to our neurological differences or behaviours, become flustered, righteous and angry at the lack of understanding and accommodations in the world, and begin using NT as some form of insult. Don't even get me started on those of us who feel we're better than others, that being born this way makes a person somehow superior to the regular masses - narcissism is an extremely unattractive trait and it's one of the ugliest mindsets I've come across in the community. Thankfully it seems to be a very small minority, and isn't limited to those on the spectrum; as mentioned above, some parents also seem to have an unhealthy idealist view of their child's neurology.

Believe me when I say, I do not tar all members of either group with the same brush, hence the use of terms like "most/many people". It's an opinion and therefore it's heavily influenced by my personal experiences. It is not fact, nor am I personally blaming any one person or group. I wish I could put out a broadcast to the entire community and find a way to explain that helps every single person understand each other, and each other's personal battles of the mind, each person's trigger points, each person's reasoning. I wish I could be more of what I seek; balanced and fair-minded and able.

This post has been quite an emotionally charged piece of writing and, as such, I rushed myself and neglected to mention the positives when I first wrote it out and pressed publish. I've edited to add the following:

In real life I've been lucky enough to find a number of wonderful people who've supported and advised me in times of need. None are perfect but their help and general presence in my life have been invaluable and I like to hope I've been there for them in the same way when they've needed it.

I'm certain there are many other people like this out there, somewhere. I believe, perhaps, they're more the silent type. Perhaps they avoid the social side of the internet, or limit themselves to reading and rarely responding. Perhaps they tried and gave up, seeing how large the problem is. Perhaps they're just getting along, living their lives quietly and shaking their heads whenever they happen across situations like those I see online. Perhaps there's a secret underground group filled with agreeable, balanced people and, one day, when I stop having temper tantrums over strangers on the internet, I'll get a letter with one of those neat wax seals and instructions on how to find the meet. Or perhaps I'm simply destined to alienate and be alienated.
Image courtesy of The Sum of All Affections


Revision of Division of the Autism Community (love that title):

Now well into 2017, I've recently been given pause for thought and have decided to revise some earlier statements; some because they were based on a perspective twisted by a negative outlook at the time of writing and some simply because the terms were deemed inappropriate or offensive by some members of the community and I respect their feelings enough to alter the text. I know it's hard to convey tone at the best of times for some of us; the internet only adds yet another barrier. I'd like to thank a fellow advocate for pointing out some of my more obvious f*ck ups and highlighting areas that he deemed triggering and insensitive, albeit not necessarily in the kindest of manners but as honest as ever.

I originally worded things quite poorly, particularly in terms of how large the scale of the problem I'm talking about is. At the time, my negative thinking/outlook lead to some very concrete, black and white thoughts. I tried to ease it off by using the words "many" and "majority" but in fact, it's a minority I'm speaking of. The large majority of autistic people I've met in real life have been fantastic people; same goes for the online community. That being said, some of the LOUDEST in the online community can be somewhat aggressive if not cruel in their deliveries and have left people (including fellow autists, some of whom have spoken up since I first shared this post) devastated in the process.

Now, I know bluntness is an issue for many (myself included) but I believe that with mindfulness and self awareness comes better prospectives for anyone hoping to gain listeners and share their knowledge and understanding, along with personal satisfaction that you've done everything within your power to do the right thing, regardless of the outcome. I believe that the forceful nature of certain individuals (who may be a minority but are many the numbers add together) are doing the cause more harm than good in some instances.

We all have bad days, we're all grasping onto our last spoons and some days we have none spare. It's understandable and it's almost expected for you to lose your sh*t once in a while; whether you're on the spectrum or not. We all have our limit. Sometimes we may go weeks or months stuck in the same fog; snappy replies and emotional reactivity levels at an all time high for continuous periods. Sometimes it might come out of nowhere and surprise you. It'll happen; if it hasn't already it's bound to and if not, you're a lucky sod :)

When that happens, we can only hope that the people around us (virtually or in reality) already know from past experience that we're not the sum of our off days or our, at times, difficult behaviour. We rely on the idea that the positive energy we bring most of the time, the support we offer and the good we do is enough to keep people from walking away when the going gets tough. As harsh as it is, a hand that continuously gets bitten will eventually stop feeding us, so we know in our hearts that people need those good days to balance out the damage inflicted; perhaps it's untrue and  perhaps it isn't, but it's what we believe (or at least, it's what runs through my head as I agonise over whether they'll forgive me, this time; I certainly can't speak for others but like to assume I'm not alone in this painful but logical process).

The problems arise when it's nothing but anger, threats and insults being unleashed. When there's only darkness and harsh truths and no remorse let alone compassion or understanding. If that shoe fits but makes you uncomfortable, then perhaps it's time to take it off. If it's inapplicable, if you know you bring light to peoples lives in some way, any way, if you try to keep your mind open as and when possible, then you know you're trying and you know these words don't apply to you.

The second thing I'd like to address in this revision is the wording around my description of young children. As was pointed out in the comments section, both the terms "feral wee beastie" and "5 year old expert in psychological warfare" were pointed out as being insensitive in nature. I understand that the term feral may have very negative meaning to some, so I'm more than happy to swap it out for something with less controversy surrounding it. However, I'd like to take this opportunity to explain it's a term I've used for as long as I can remember; a term of endearment I use for children of all neurotypes and that has absolutely nothing to do with autism or a lack thereof. While on the subject, I'd like to clear up that the Feral One's nickname has nothing to do with his neurology and everything to do with his personality, interests and our family's personal sense of humour. As a young infant he wore animal print cloth nappies, had long curls and an amber necklace, communicated with animals long before he did with us and spoke in a series of meows. He also climbed everything, danced like a hippie and liked to chew chicken off the bone. He's one of four autistic children and the only one with that nickname. See where I'm going?

There was one aspect I simply cannot apologise for or put across in a less controversial manner: a shared diagnosis is not solely enough to form a friendship with, in most cases. The people I've formed friendships with, online and in real life, are all incredibly unique individuals; some with a similar mindset to my own, many others with differing opinions and beliefs. Some share one or two interests with me, some are friends through circumstance, proximity and experience. They're a beautiful mix of neurodiversity; some deemed typical, some diagnosed ASD, some with other conditions or a mix of many. Some extroverted, some introverted; some a mix of both depending on the day. Some politically minded, some absorbed in nature and deeply spiritual, some who paint their feelings and some who bury them. It's my own expectations here that are the issue; I expected to feel at home and less bizarre. Instead I discovered that I'm simply different no matter what community I'm a part of. That's hardly the community's fault, but it's my experience nonetheless.

Finally, I'd like to encourage feedback of all kind; constructive criticism is always welcomed over criticism alone but I will never silence a commenter unless the comment contains explicit or vulgar content. Transparency and freedom of thought is paramount, in my personal view; this blog is a sum of experiences and I welcome all contributions, regardless of whether we agree on the topic at hand. Thank you as ever to my readers and I apologise if I caused you any personal distress with my poor wording. 

Friday, 9 October 2015

Autism, Apple and Love.

A week or so ago I took a picture that made my heart melt. I've decided to share it with you, my readers, as I feel you may see what I see too.

My partner's middle child, the Wanderer, is five years old and, like many in our little family, autistic. He's entirely non-verbal, wonderfully smart and has quite severe sensory issues. He prefers to do his own thing most of the time and, as such, doesn't interact or connect much with those around him.

Although their Dad sees them regularly, picks them all up after school three times a week and drops them off at bedtime, he's often still sad and frustrated that he can't be there more. He adores his boys and attempts to spend time interacting with each of them separately every visit.

The afternoon I took this photo we had brought every tablet device in our household down for the boys to use. The Wanderer usually sits alone in his chair but this time, because he was so absorbed in playing a game, he allowed the Space Cowboy to share his armchair and sat that way with him for over 15 minutes. He so rarely tolerates people for such lengths of time - usually he'd be off circling the living room before your rear hit the seat :)

Such connection was lovely to see - if he'd pushed it or started trying to talk to him, it could have ruined the moment, so he stayed quiet and played on his own device next to his son.

Some people could see this and think it sad - a sign of disconnection, technology ruining family bonding. When, in fact, the opposite is true.



I truly do love this picture.

Tuesday, 29 September 2015

Drama Club, the Worst Walk Home Ever and "why I don't get left to my own devices"

Last week, the Soulful One took part in a free trial for a local drama academy to see how he took to it (at £100 a term, I'm not taking chances or assuming he'll enjoy the class and/or listen to the teacher) and I'm happy to say we'll be back again this week.

We took both pairs of ear defenders as the Feral One was joining us (no childcare and the class happens to fall on one of the days the Space Cowboy is busy with his boys), of this I'm very glad as it was indeed quite a noisy class! FO brought his big motorised Thomas toy along which, unfortunately, was just as noisy; as the bathroom was located a few feet away from the main hall I set him up in there away from the chaos - don't worry, it was a very clean bathroom ;) this way I could watch them both.



SO joined the other children around the teacher; he listened very well for the first 20 minutes or so. Once everyone was up and out of the comfort of the circle on the floor, he began spinning around (as he tends to do when his mind wanders and it's a busy environment) and forgot to pay attention. I brought him out after a few minutes of this, gave him some juice and asked him to try again. He managed to follow what she was asking of them for a few more minutes before lapsing back into spinning.


Meanwhile another little boy had decided from the outset he was NOT taking part, and made his frustration at being made to stay very clear and very... verbal... :) sweet relief from the shrieks was found when he noticed the Feral One and Thomas in the bathroom. They somehow managed to share without having what I (and, I think, his parents) were expecting to be a WW3 style blow-out, so all was swell in the end. He actually gave it a bit of a go toward the end, once the pressure was taken off - nice to see him turn it around, whoever he was!

I kept watch over the Soulful One as he ran about the place - which was fine as the others were also running, though with purpose and doing actions, he wasn't causing a distraction to the others and the teacher seemed completely unfazed by his antics. I called him over once again when they were being asked to line up in groups as he was, in typical SO fashion, rolling up and down the gym equipment at the end of the hall, completely oblivious to the ongoings nearby. More words of encouragement, more juice and a bathroom break later I guided him back to the group - this time, he managed to follow what she was asking of them for around 10 minutes. Although a little erratic and highly comical, he copied actions and (sort of) stayed where he was told to when asked; he even said a phrase on cue! Proud is an understatement :) 


With less than 10 minutes left, I began getting the Feral One prepared for leaving and we stood together watching the last few minutes of class. SO lost interest again and went back to his gym equipment but I didn't push him any more. He did, however, managed to sit down for a minute at the end while everyone gave themselves a clap, received welcome packs and said goodbye. We were just leaving when I turned and walked head first into a table leg (one stacked upside down on another), smacking just under my eye and instantly howled out the word "F**K!" amidst a sea of small children and their parent(s).



This was the start of the Worst Walk Home Ever.

Holding my face in equal amounts of pain and shame, we left the centre and crossed the road to the shops. I sent the Space Cowboy a text to let him know we were beginning our walk home and to tell him my tale of woe, we stopped in the shop to get some treats and I bought a bag of chips from the nearby chipshop for the boys to share at home. Feeling like I'd successfully recovered from my earlier mess up, we headed home.

Ten minutes into our journey, the Feral One vocalised his need for the toilet. I swallowed panic and asked him to hold it as long as he could, we were nearly home (lie). SO was walking slightly ahead as he tends to do, so got to the subway first. He likes to climb up the sides and, as FO and I got closer I noticed a cyclist coming toward us on the path... right as SO started running from his spot on the side of the subway. They almost clashed but luckily the cyclist was able to weave and I reached him about the same moment. I chastised and apologised, we moved on and I sent another text to tell SC of the scare.

We were now just ten minutes from home, crossing by our local skate park, FO repeatedly letting us know he needed the toilet and SO sulking after being told off. I didn't hear them at first, I still had my ear plugs in from being in the centre, but then I turned to see a group of young lads asking me to throw their ball back over into the court they were in. I accepted, walked a few feet into the field and tossed it over. We started walking again when, a few minutes later, I went to check my phone for a response. It wasn't in any of my pockets, so I put the bags on the pavement and checked them again, then checked through the bags.




Panic rising, I started back at a light jog, shouting for the children to follow. I reached the spot I stopped to help the boys and searched all around; nothing. I began to cry - I don't like admitting this, even partly anonymously on here. I've tried many therapies and distractions, mindfulness and meditation but nothing has ever been able to stop my tears from falling during times of panic.

 Taking hold of the boys' hands I began to head back to the spot where I sent my last text but it was useless - the phone was gone. As we walked past the skate park again, I checked where I'd walked again but when I came back - this part was what broke me - my poor boy had given up and was stood in wet pants and a little puddle. I sobbed as quietly as possible, hugged him and told him how sorry I was for making him wait. We hurried home as fast as we could but the tears just wouldn't stop - only the Soulful One was dry eyed.

We threw ourselves through the back gate - I'm not sure I've ever felt more relieved to be back in our "safe space". I started running a bath for them and put a movie on in their room for them to sit while we waited for it to fill - I'm both ashamed about the the next part of this story and shocked at the ferocity in which it happened. As I've done in the past during extremely stressful situations, I harmed myself. Badly. Not badly enough to require hospital treatment - just steri-strips at the walk-in centre later on. My arm is still bruised from the bite marks and 3 of the 17 cuts on my arm and leg are still weeping. I'll remember this one for a long time - not least because of the scarring. I cleaned myself quickly and wrapped flannels around my arm and against my leg, hiding the evidence before bringing the boys in for their bath.




Quickly bathing the boys, I reheated their chips and rang the Space Cowboy from the housephone. I'd somehow managed to stay calm(ish) around the boys, especially once we'd reached the house. Within moments of hearing his voice I broke down again - I couldn't calm down enough to articulate what had happened in any way, shape or form. He eventually said he couldn't understand and was going to have to hang up if I couldn't calm down. He had to hang up. When he got home 40 minutes later, I was rocking myself back and forth in the middle room and the children were in their beds - granted I'd forgotten teeth brushing, school reading book and, very likely, a few other things too.  



Now we're here. We're trying to find out about the possibility of having another carer stay with me during the hours SC has to be away - I'm simply not equipped to handle stressful situations. This is part of the reason SC stays with me every other time - the time he has with his boys is just not a time he should have to part with. He cares for me for 156 out of the 168 hours in a week. He deals with everything; medication, communication/translation, travel, emotional outbursts and everything in between. He's my hero but he's also human, he can't be here every single minute of the day. Unfortunately, autism and its co-morbids don't have a pause button and neither does life, nor it's stresses.


Monday, 3 August 2015

"You're Just Dozy"

How many times have my genuine problems been laughed off as "just..." something? Dozy. Daft. Clumsy. Forgetful. Being stupid. Not paying attention. Or worse, when those speaking become irate or frustrated; Attention seeking. Naughty. Horrible. Retard. Don't deserve my children. Psychotic. Liar. Manipulator. Annoying. The list is endless, really. 



These words stay in my head and replay every time self hatred rears it's ugly head, reminds me I'm at fault, if I could just stop being whatever the word of the day is, perhaps I'll stop pissing people off, breaking things, banging into walls and tripping over nothing. No matter how much my rational mind tells me I'm not responsible for these things therefore I'm not to be blamed, my emotional mind is torn apart by these insinuations.

I'm not sure if the person means well - sometimes it seems as though they're trying to make light of my issues so as not to draw attention to the "A" word, sometimes it just seems senseless and cruel.

Over and over, my head berates me in words and phrases slung at me in times passed - "you're being f**king pathetic" "selfish child" "other people have it worse, why can't you just be grateful, why can't you be normal?!"

The last words a certain ex partner said to me after telling me to never contact him again were "if he asks why he doesn't see his Dad, tell him it's because his mother is a psychotic b**ch who can't just be normal!"

Well, I think we all know why I can't "be normal". I can act it for short periods but that leads to such a dip in energy that the repercussions are hardly worth it. I've had years of people taking their frustration (admittedly, caused by my behaviour, silence or inability to communicate at the time) out on me. Do they think because I'm autistic that I don't take those in? Remember every word, I remember every word. In fact, I'd say my memory (long term, not working/short term) is better than average, so I'm MORE likely to remember and ingest those poisonous words.





Even when light hearted, apparently meant to make me feel "better", the words just serve as ammunition in my already overloaded arsenal of self abuse. Please, before you take your frustrations out in verbal form, take a moment to remember my pain and think before you speak. I may look completely unfazed, even blank. Inside I'm breaking and every new word, every "why can't you just..." "stop being..." and "I can't take this, you..." becomes a tool in which to destroy what little self esteem and emotional balance I have left. I know I'm not alone, and I, at least, have a voice to speak out. Other's don't, and are trapped in their own personal hell with no way to stop the verbal onslaught. Even if you don't think they hear or understand you, there's a damn good chance they might - please don't take that risk. It might seem better than taking frustrations out other ways, but can be just as harmful if not more.





Please, if you have any experience with this topic, whether it be on a professional or personal basis, feel free to share your thoughts, stories or links in the comments below. Thanks for reading, Pix and co x

Sunday, 7 June 2015

Sports Day, Stimming and Sensory Overload

As you may have already guessed from the title, I attended the Soulful One's Sports Day on Friday - definitely a step in the right direction after my non-attendance last year. Please, don't get me wrong; I'd love nothing more than to be cheering alongside every other parent for all his events, but some things are, or seem, insurmountable some days - and sometimes the little victories are the ones that mean the most. 




So, after a hectic morning spent bouncing around the house like a loose firework, the Space Cowboy and I dropped off the small ones at their respective classes and joined the other parents on the school field.

At first, I began to panic as I thought I may not recognise him among the hundreds of children on the field and that we'd miss his first race, but, as usual, SC came to the rescue and spotted him almost straight away - with the Soulful One spotting us a few moments later, breaking away from his team and running over to give me a hug. I'm so, so glad I didn't miss this. 



The first race was a difficult one for him - it involved skipping (rope) back and forth from point A to B, then (making things even more difficult) he was to pass the rope to the child behind him, then take it again when their run was over. Both his gross motor skills and fine motor skills are fairly weak, so he struggled along for most of his turns - almost getting it on his last run. The important thing here is: He kept trying, despite the child he was swapping rope with telling him repeatedly to "just run instead", he tried his bloody hardest and I'm not ashamed to say I was the most vocal parent there in that moment :) I'm so incredibly proud of him!



He continued to try his very best in the next race, and the next, but by that point he was tiring out fast and started to lose concentration, wandering outside the team and spinning in circles, aimlessly walking and, once it was time to change activity again, the chewing started up too. I can't say I blamed him - the noise, bright sun light, oodles of people both miniature and full size stood in groups everywhere you looked and constant change of activity was wearing on me too, and watching my little guy start to lose himself kicked off emotional reactions too. 



By the next race, he was struggling to follow direction and had started chewing and fidgeting near his mouth - something he does when he's tired or stressed. After a bit of confusion, he got back in line for the next activity and took a shot throwing a bean at hoops a foot or so ahead of him - he missed on his first go, but on his second managed to get it in and bagged his team two points! He was so made up, he came for another hug!


Quick photo-op with two of my favourite boys.


Unfortunately we had to leave during his next race as his younger brother had speech therapy half way through the activities (I believe they call that "sod's law") and even more unfortunately, his concentration and behaviour disintegrated even further after we left, leading to refusals, panic and meltdowns. Other parents may have watched him, some sadly with understanding, some in shock and some, quite likely, muttering how "they'd straighten him out" and other such things. Some may have looked away. Those reactions aren't really important, but they're a regular occurrence when out in public with the Soulful One, so they're notable nonetheless. They're not important because I know without a doubt (and he does too) that he tried his best in both the activities themselves and in keeping himself composed for so long in such a new, stressful environment. He's my little champion. 





By the time I picked him up at hometime, he'd settled down into a calmer mood, was fairly bright and happy if a little worn out. We tried to keep the rest of the afternoon and evening as calm as possible - quite a difficult feat with five children aged 6 and under bouncing around the living room for three and a half hours. He had fun playing with the boys but by 6 o'clock he was covering his ears to block out the noise of the Space Cowboy's game.



I took him to one side and asked if he'd like to go into the spare room for some alone time with the tablet and he nodded quietly; so, after getting changed into his favourite PJs,  that's how he spent the rest of his Friday evening:




For about 3 hours, until we finally went in to ask him to get into bed for a night-time movie night with the Feral One (they recently began sharing their bedroom again after almost a year apart - needless to say they're overjoyed :)), he sat crouched in the same position playing his Moshi Monsters game in silence. It may seem odd to some, but this really is the best way we've found to help him de-stress after a taxing day. He needs solitude and the activities on his tablet keep his mind and hands occupied while he's so tense, which helps reduce the amount of anxious lip chewing/sleeve chewing that tend to occur when he sits and worries with nothing else to think about except the things that've gone wrong that day, or what could go wrong tomorrow. It helps him zone out of the world that causes him so much aggravation and sensory hell. Bottom line - it helps.

Here he is with his little brother before bed, mildly irritated with me because I'm insisting on taking a picture while he's trying to watch King of the Railway:




Wednesday, 20 May 2015

Change and the inevitable.


If there's one thing most people know about autism, it's that it and change do not mesh well. One thing people may not realise, however, is that even positive changes can throw our lives and minds into turbulence, often leading to strange or unwanted behaviours; big changes in an individual's life may even lead to depression. 

As an adult looking back throughout my childhood and adolescent years, it's easy to see the triggers behind certain periods of erratic behaviours - divorce/my father leaving lead to a disastrous change in behaviour back in early childhood (I believe I was 5 at the time), every time I changed teachers or classes, or a new person entered my life. When I changed schools at 13, I developed a phobia of the new school and my attendance went from 95%+ to 0% over the course of 3 months. I haven't been able to handle any education setting for more than a few months since - even then, it's hit and miss over whether I can overcome the anxiety that plagues me when I think about entering a classroom. 


When my therapist passed away, I fell into a pattern of substance abuse and extremely negative behaviour - I lost all sense of myself for months, until a friend pulled me out of it, and I slowly adjusted to life without my old friend.

When my partner moved in, I became a nervous wreck - in part because my "safe place" was no longer mine, but in part because of the sheer shock of how much change had to take place to take the next step in our relationship. 



And this week, because we've adopted two beautiful baby bearded dragons and have their vivarium set up in our room, I'm back in "that place" again. My brain is scattered and I'm regularly forgetting daily tasks I'd previously "nailed". I'm losing words, more anxious than usual and seem to be ready to snap at all times. I even feel physically worse - the pain in my joints seem even more acute, my body's aching like I spent the entirety of yesterday in the gym and my sensory "issues" are even more prominent - ears buzzing, headaches from simple daylight, completely intolerant to light touch and the feel of most fabrics setting my teeth on edge. 



I'm desperately trying to keep a hold on myself and just. stay. calm. 

But it's not quite that simple when your whole being has been affected. I'm sure many of you will relate to the fear of change - it's not an unusual trait in people. Even if you don't quite experience the full range of reaction's I've mentioned (though I'm certain quite a few of you will), it's easy to understand the new and often bizarre behaviour that can crop up when a change is made or just happens in a person's life when it's explained by those who experience it. I'd like to invite anyone who does to share their thoughts too; sharing your experiences may help others in the same situation, at the very least it brings solidarity and comfort to others who'd otherwise feel alone.



Hopefully I'll adjust to life with our new friends soon - I'm otherwise extremely positive about their arrival, very excited to be caring for them and literally bouncing with the want to hold them, feed them and watch them 24/7. I think the children may be feeling a tad shut out, as they're also acting out more than usual. Or maybe I'm just more sensitive to it. Who knows? Perhaps our new additions to the family have inadvertently caused a reaction in them too. Despite the upheaval their arrival's caused, you can't deny they're definitely sweet enough to be worth it.