Tag: Autism

Something Happened in Bali

Offerings

Anyone who knows me knows that I looked forward to visiting Bali with such excitement that I could hardly contain it. If someone mentioned the word Bali or holiday to me, I broke into this Cheshire cat grin and couldn’t string a complete sentence together. I am not well traveled and my income lies somewhere between minimum wage and living wage so the fact that I had the opportunity to visit somewhere so exotic was the stuff that dreams are made of.

Did Bali live up to my expectations? In short, no it didn’t. Generally speaking if people have asked me if I had a good holiday, I have given a polite society response of “Yes, it was brilliant thanks” for most people, this is satisfying enough. The same applies if someone asks “How are you?” and you respond “Fine thanks”. The conversation then ends and everyone goes on with their business.

If my trip to New York in 2014 made me feel bold & brave then Bali has unsettled me to such a point that at times I feel like I have taken at least five steps back in the progress that I have made over the last eighteen months. The thoughts in my head ricochet like a game of pinball stopping me from concentrating on any one task for longer than a few fleeting moments. Although I know that writing down & organising my thoughts would help; I have done everything I can do avoid doing so, including ironing & washing my car!

The last thing that I should have encountered on this holiday was conflict and yet we did; not between our unit of three I hasten to add. It serves no purpose to share details with you here in much the same way that I haven’t shared details about my ex-husband. Some of you know the story and some of you do not, it’s best that way.

Out of the drama that unfolded I have learned that my daughter has picked up my ability to go into ‘emergency mode’ and by that I mean put emotions aside, find and execute practical solutions very quickly. Can someone please remind me of this when she wants to go travelling next year! Tell me that she is a strong & capable young woman who can handle herself well, with integrity and confidence no matter how scared and hurt she is feeling inside.

For while I saw my son retreat into his own autistic world again, non-communicative and withdrawn, having worked so hard on his social skills and his belief in himself, to see this destroyed by one person’s lack of awareness was heartbreaking. The single mother’s guilt and loneliness I felt for taking them almost to the other side of the world, just to face distress on what should have been an idyllic holiday, reappeared and made me vulnerable. I didn’t like feeling that way at all.

I have been overwhelmed by the kindness of a stranger; the relative of a friend who stepped in to help us. I felt gratitude for my family & friends for the offer of money to assist us, it came immediately and without question and in total trust (although I was too proud to accept). I also felt less alone in a foreign country with the daily messages from those in the know back home who wanted nothing else but to just keep me grounded.

I will have to come to terms with what happened and this is going to take far longer than the week that has passed since we returned. It’s not the worst thing that has happened to me, not by far, but it has left wounds and they need to heal. The process has started by being back home, feeling love from family and friends, being reassured, being hugged, and being told ‘not to be a dick’ when appropriate! Sleeping (or in my case, not sleeping) in your own bed also helps.

So what else happened in Bali?

I should probably start (BD – Before Drama) with Tirta Empul. Tirta Empul (to quote Wikipedia) is a Hindu Balinese water temple located near the town of Tampaksiring, famous for its holy spring water with curative powers.

Of all the temples that we saw or visited, the experience here will say with me forever. We traveled to Tirta Empul as part of a private tour with an English speaking Balinese driver called Ketut (Balinese names explained), we didn’t expect to stay very long but events overtook us. I don’t really know how but Putu, one of the Temple custodians sought us out. Was he skilled at ‘working’ the tourists or was there something else far more spiritual and unexplainable at work? I think the latter.

Water TempleBlimey could Putu talk! He guided Emma through the ablution & blessing process. He then sat and talked to me, he shared part of his life story at first I was extremely skeptical but he quickly (intuitively?) up on my past, mentioning specific things that he could never have known, it disturbed me and I was very guarded but emotion took hold and tears flowed; how can a stranger have such an effect on me?

He escorted us through the Temple explaining this & that (it’s a bit of a blur to me) but every so often he would turn his attention back to me. He was not going to give up on his mission! I am not a religious person, but I do have respect for faith, Putu explained the Hindu belief of Karma & Dharma to me. We think of Karma as someone getting what’s coming to them, but it’s nothing like that! Karma is the law of cause and effect by which each individual creates his own destiny by his thoughts, words and deeds; and dharma, which has no single word western translation but simply put is the eternal law of the cosmos, inherent in the very nature of things – that we are all connected. At times during our visit Putu took my hand; towards the end of our visit he insisted that he could help me and he took my head in his hands, he spoke softly to me (a deeply personal message), and he applied very specific pressure to the back of my neck. I wish I could tell you what I felt; but I can’t even begin to understand it.

Anything else?

I completed two of the items on my bucket list! Whitewater rafting & having a cream tea! I have decided that a cream tea in Bali (lovely though it was) doesn’t count and I haven’t crossed it off yet- I’m looking for the fully English experience with that one, either in a pretty tea room or a house with a history.

Emma & Matt went Canyoning (with Adventure & Spirit)! I did not. They have balls of steel. I do not. I have seen the Go-Pro footage & that was enough adrenaline for me. This was the highlight of the trip for them and the company deserve their Trip Advisor rating.

Is there more? Hell yes!

I have had a massage on the beach overlooking the Indian Ocean! I have worn a bikini in the first time in…well about forever! I have seen Volcanoes, bathed in hot springs, cooled down in waterfalls. Stared in awe at rice field upon rice field, pondered the human endeavour in building the terraces, contemplated the success of the irrigation and water management vs the UK’s hopeless flood/drought methods and wondered why we cannot learn from a system that has worked for over a thousand years.

Rice Terraces

I have been disturbed by the gluttony, extravagance and overindulgence of some of the resorts vs the poverty experienced by many of the island inhabitants. I have felt guilty for enjoying some beautiful meals when others have nothing.

I have always been fascinated by creative people and Bali has more than its fair share of talented painters, woodcarvers, silversmiths, stone carvers, every imaginable style of textile work there could possibly be. Every single village that you pass through bears testament to this.

FlowersBali has many sides and many, many colours. It has a unique landscape and feel to it; grey volcanic ash, lush tropical forests, green paddy fields, golden beaches, blue skies, turquoise sea, vibrant ceremonial clothing, a black undertone of corruption, flowers, flags & kites everywhere. Oh and scooters…nothing can prepare you for the scooters and the ‘no rules’ traffic management! Bali also has a serious waste crisis. The Balinese traditionally used only organic materials, leaving no waste behind. With the introduction of plastics the island is covered in non-degradable waste from head to toe. The blame doesn’t lie entirely with the tourists either.

Catpooccino!
Catpooccino!

What about the coffee?

I don’t like coffee, thankfully! Just Google Kopi Luwak & you will see what I mean!

Final thought?

I am still in awe of the lovely Balinese people that we met on our visits, tours, outings, meals & excursions, many who guided us through our adventures, or who served us beautiful meals or spent time bartering with us when we bought our souvenirs. They are the happiest and kindest people that I have ever met.

Will I go back? I doubt it very much.

Unite & Be Awesome

A weekend coffee share

If we were having coffee (or if I was having fruit tea), I would tell you that I have been really out of sorts this week.

If we were having coffee, I would want to talk about what had been happening in your week. I would want to avoid so much of what has been happening in my world.

It’s not major stuff (well actually some of it is), but I would hope that instead of dwelling on it we could sit and chat and put the world to rights. So much dialogue goes on in my head that it would be good to sit and just talk!

I cancelled our coffee date last week because things were getting on top of me, I took a rain check and rescheduled to this week to see if it would help my mood. It didn’t.

I’m feeling angry and tense, it’s been hard work getting my life back together and in one fell swoop someone called me “needy” and I lashed out. If I was needy do you think I would have spent all these years alone? Do you think I would have done something about the loneliness before now? If I were “needy” maybe I would have looked for a man to supplement my less than living wage income? Or maybe just had casual sex, if my needs were not being met by a man? If I were needy do you think I would have coped so fucking well with bringing up my children?

But then I got to thinking…What if being needy wasn’t an insult?

Surely it’s part of the human condition to want to be with someone else? We can tell ourselves that we don’t, but there is so much research out there that proves otherwise. Wait a minute…I used the words ‘want to be’ NOT ‘need to be’. Therein lies the difference.

So what else has been going on? Would you like another coffee? How much time do you have left?

If we were having another coffee I would tell you that I resigned from my voluntary position. I didn’t want to; I wanted to make a difference. I think I did for a while, but to make a difference even on a small scale you need other people to help you. Yes NEED.

I would also tell you that linked to that decision was the fact that my son is anxious again and that means that I don’t get much sleep. A fourteen year old will pace the house into the very early hours if he is troubled and anxious. He will lash out at you because you are the one who is always there, He NEEDS you.

He’s anxious because his safe place, with people he trusts, and activities that he enjoys, and is very good at, is under threat. Why is that? He’s anxious because the social situations are challenging him. He sees only black and white, he’s extremely literal. He can’t easily identify that he’s being bullied by someone because they might see him as a threat; they might resent his single minded drive to achieve. They most definitely do not understand any aspect of autism.

If we were still drinking coffee, I would tell you that I fought back. Publicly, on Facebook. I NEED to protect my young. I NEED them to know that I have their back. They NEED to know that I have their corner.

So this happened- I took over my son’s Facebook account.

But then the messages of support for him started pouring in…

Matt’s a cool guy and if anyone is doing such ridiculous things we’re always here even though we don’t speak a lot!
Here for u Matt…you’re a nice guy and them who bring u down don’t let em cuz u will achieve something and will gain things mate
People only need to bully if they are lacking I’m their own lives, it is no true reflection of Matt, as the entire Evans family is frankly nothing but kind and genuine.
Luv ya Matt
Always here for you Matt u was was one of my first friends at school
You know how proud I am of you (from his sister)
 I’m here for u m8 
Unite and be awesome my friends (my personal favourite comment) 
Do not listen to them they are just being dicks ur a good person and a good mate  
stay strong ma friend

…And so it went on and on without a negative comment amongst them. He NEEDED that. I NEEDED to see that happen.

So the way I see it is that there’s absolutely nothing wrong with needing other people. And thank you, I really needed that fruit tea and chat.

’til next time then xx

What’s Your Social Story?

Social Media Cans

If you have any contact with a child with Autism you will be all to familiar with the term Social Story, but that’s not really what this post is about. However, these days, we all have a social story of a very different kind. The story that we set out to show the world via Social Media.

The end of my marriage coincidentally was the beginning of my social media story. It all began when my daughter wanted to have a Facebook account. The only way I felt comfortable enough to let her do that was by having one myself and ensuring that I had access to her password and could monitor and close the account down should I feel that it was ever being used inappropriately.

I quite like Facebook, or possibly did like Facebook. Life as a single parent is pretty isolating at times and more so when you have a child with additional needs and also have very little money for babysitters. It means you don’t get out much! Facebook was useful for keeping a virtual eye on teenage habits (the trick is to watch & not comment) it also enabled me to keep in touch with friends, some who lived many miles away and some who lived in different countries altogether. What I hated was the teenage idea that more Facebook friends meant that you were more popular.

I “cull” my Facebook account quite regularly, it might seem harsh to de-friend people, but if they are just there sitting on the periphery of my life and have no interest in interacting with me what’s the point? It’s the equivalent of the friend that never responds to your invites and doesn’t call you back. There comes a point where you have to let them go.

Linkedin is another social media site where I have had quite a lot of experience. I was asked by a friend to work with her on a project on Linkedin. It involved me working from home (perfect for childcare) and coincided with me needing to change my job from a well paid role with an IT company where I was so desperately torn between my new (sole earner) family responsibilities and my children’s needs for a more present, calmer mother. I’d also has a spate of illness which ended in me needing an emergency operation. Ill health focuses the mind to what really matters! Working from home it was then.

It was perfect timing, I was able to regroup my family, recover and work evenings. I grew a Linkedin Group from 1800 members to nearly 18000 in just under two years. I knew very little about the field that I was working in, but I did know how to talk to people and encourage conversations. Social Media conversations do not start themselves. You have to be present and you have to put the effort in. Just like in real life.

Jumping forward to the point where my son wanted a Facebook account, I considered that I was quite savvy in the world of social media. WRONG! This is the point where I became more wary of social media. Whilst any social interaction for a child with autism is seen as a step forward the pitfalls are so exaggerated. Bullying is more rife than in the real world as people are somehow braver (or more stupid?) sitting behind a keypad, keyboard or touch screen. It reinforces my instinctive belief that you  have to be a part of your child’s online activity. I have deleted content, blocked and reported (to the police at one point) a great deal of vile content from his Facebook. It’s very clear that many parents do not have a clue what their children are up to on social media. Yet it remains a valuable means of communication for any teenager in this world today.

My relationship with Facebook is love/hate. I love seeing updates from friends (real friends), I enjoy feeling that we are still ‘connected’. I hate a great deal of the ridiculous stories that get shared about on this forum and I mostly hate that children are not monitored in their online activities.

So what about Twitter? I find myself with a relatively new Twitter account mostly because said daughter has fallen out with Facebook and defected to Twitter, she has also moved away from home and it’s a nice way to touch base with her daily life and occasional rants. More than that though, I have found that I am in a odd place myself.

My long term relationship seems to have ended, my children are older and I am craving the company of like minded people. I know that I need to ‘get back out there’ but I am not really ready YET. At the moment  I am enjoying ‘meeting’ new people on Twitter. Sharing parts of my life that I have, until now, kept really private and finding out that my story, not just my social media story, resonates with others. I feel safer sharing some of my experiences with people who otherwise don’t know me but I also value the human interaction that has been missing in my life.

I am being myself and being totally up front and honest about who I am, with a view to learning that despite some challenges along the way, I know that I need to steer my story nearer to where I would like it to be.

 

What is Normal?

 

picture-in-your-mind

Is any family normal?

If the opposite of normal is abnormal where do you draw the lines?

Synonyms of normal might include usual, standard, typical, common, ordinary, conventional, to name a few. Do they describe your family? Those words don’t describe my family and for that I am quite grateful.

I have an autistic son; I have no idea what it’s like to have a ‘normal’ son because he is MY normal. In much the same way I have a fiercely tenacious daughter, it scares me at times but it’s quite ‘normal’ in our house. I really don’t consider either of them normal; they are exceptional in every way.

One of my biggest frustrations has been the measuring stick that is used in schools these days. My daughter was constantly told that she should be less sensitive. WHY? Don’t we need sensitive people in the world? My son had to learn to read from fiction books that didn’t make any sense to him, they seemed pointless. But give him a technical article about a ship or boat or train and he could read every word and remember every fact. Why was this so much of a problem?

At times I have craved normality, feeling  that we just limp from one drama to another, each one requiring more tolerance, patience and strength than the last and taking what little energy that I seem to have left these days. But I don’t think there is one that we haven’t conquered. I realise now that doesn’t make us normal – that makes us successful. But I am only just beginning to see this.

Discrimination

the unjust or prejudicial treatment of different categories of people

Is it possible for a white girl from a middle class village to experience discrimination?  A little while back, I read my friend Pavla’s blog Small is Really Beautiful and it got me thinking about my own childhood home. It was so interesting to read her views on racism in my own country.

Chobham

I lived in a small affluent Surrey village between ages 9-18, in the only social housing in the village. As a teenager I found it very isolating as the “council house” kids were not considered appropriate friends for other wealthy villager’s children. My school was miles away, as was the nearest town. Transport out of the village was a single bus daily, miss it and you had a long walk! I hated it!

Without a doubt I have been discriminated against as a single mother. There will always be some article or report somewhere blaming a heap of issues on broken homes and single parents. Even people who I thought were friends distanced themselves when I became single.

It’s my experience that any small “difference” from the norm will get noticed, discriminated against or become the target of bullies. My son has been bullied at school because of his autism. My daughter has been isolated at University by a group that quite literally tormented her because of her drive and determination (she didn’t want to take part in the constant drinking).

I have a few questions for you all. What is the difference between bullies, racists, homophobes, misogynists and the like? Are they simply people who never outgrew the playground? Do they ever choose to grow up and think about their past and change or apologise?

Would you agree that education is the key? I think it is, but not formal education. It’s OUR responsibility as parents to teach our children respect for all human beings. To help them find the joys of being with people with different outlooks and experiences. Help them to learn that, for the most part, each individual wants a good life just as we all do. The countries that we wage war with – they have people there with families too, just the same as you and I.

My life has been enriched by people who are categorised as foreign, gay, autistic, disabled, but to me they are just my friends and family.