Wednesday, 16 January 2013

A slice of life from the inside.

I started this blog a while ago, but got so bogged down that I gave up. So many people have suggested I start one, so I'm giving it another go. I often hear myself saying that people have no idea what our life is like compared to "normal" families, and how hard it can be sometimes. I spent so much time trying to be "normal". Useless energy I have found, and it has taken me literally years to come to terms with that. I know now that our life is OUR reality, but I feel I can share that. I kinda hope that giving people insight into what it is like to live with Autism may help you to not judge us, or our boys, and the hundreds of others like us. If you stop and think that maybe that kid that appears to be having an enourmous tantrum, and why isn't that Mum disciplining him and that he needs a good smack on the bum? If my blog makes you pause to think that maybe he is Autistic, and that tantrum is really a meltdown that has happened because he is completely overwhelmed by the crowds, the noise, the lack of control in an unfamiliar environment and that his Mum is just trying to help him through it and avoid the disapproving stares and judgement, that she can feel, even if you don't actually say it; then my blog has done it's job. My boys are not naughty. They are autistic. Our parenting style differs greatly from yours, because the parenting style that you have, we probably tried and failed.The commonality that we all have though, is that we love our boys to the ends of the earth. In that, we are the same. Like you, we are trying to raise out kids in the hope that one day we will leave this world with happy, functioning adults. Whatever your aims of parenting are, I can bet we are the same in that.  We will do anything to help our boys and make them happy in a world that doesn't understand them. Let me help you understand. Welcome to my blog. Get ready to learn. Here is a slice  of my life from the inside.    

I will give a bit of history into my boys. James is 7, Ben is 6. Stephan and I have been married for 9 years
and we live in Auckland, New Zealand. I am English, I came out here in 1999. Stephan is German in origin, but he has been here since he was 11.

James was diagnosed with Autism at the age of 3, Ben at the age of 4.  I tell James that when God made little baby boys, the angels gave him to us. I tell him that he was a particularly bright, and lively spark, more sparkly and shinier then all the other sparks. The angels thought that he needed VERY good parents, so they gave him to us. I tell Ben that the angels thought that he was especially bright, like a ray of sunshine, and so that is why he is my little ray of sunshine.   

James has Autism Spectrum Disorder (ASD) with aspects of ADHD, high, disabling anxiety, and Sensory Processing Disorder. He is a sensory seeker, not that that will mean much to most people, but it defines James. He was diagnosed at 3.

Ben has ASD, and Sensory Processing Disorder. He was diagnosed at the age of 4. He is less obvious then his big brother. Both my boys are high functioning and verbal (most of the time anyway!)

I could go into the definitions of his diagnosis, but it would be boring, and you will learn about how this affects him through my blog posts. My blog is to tell you about the reality of living with Autism. James and Ben will tell their stories, through me. James, Ben and myself and Stephan will tell our stories, some funny, some sad, and whole lot more besides. You see, living with Autism is a roller coaster of a ride; unpredictable, scary, hold your breath and go for it. But you'd do it again in an instant.Sometimes I want to scream, sometimes I want to cry, and sometime my boys and I, and my husband, Stephan, can appreciate the most amazing highs.

I am in the middle of the loooooong summer holidays. Any parent of a child with ASD will tell you what a challenging time it is. Two weeks, hard, but the end is always in sight. 6???? God help me, I am losing the will to live. I am in week 4.  I am not going to blurb on about the professional lingo, if you want that, google it.  Without the structure and routine of school and term time, they have to invent their own. I start out with the best intentions of making sure they know what is going to happen and when with visual diagrams and pictures of things that I have planned for them to do. Falls by the wayside usually, as they are pretty good at doing their own. The groundhog day routine is sucking the life out of me, but doing the opposite for them. They love it, right down to the colour coordination of their lollies. Getting wet on the trampoline with the hosepipe,which they would do every half an hour if I let them. Had to put boundaries in place for that. Lego. My living room is being taken over by Lego. There is something very soothing for them as they sit in the "w" position (proprioceptive grounding for those in the know), methodically building their Lego, orally regulating which is occasionally in sync, but mostly sounds like a cacophony of tuneless tunes with a kind of beat thrown in. Time for ice blocks means that is is after lunch, we don't have them before lunch. You see, they have no concept of time. Well, neither do most children I hear you say! Mine really don't. One hour could mean 10 for them, and their routines are what dictate time. 

I work hard at not making them agoraphobic. They don't like people, or crowds. At all. Really, it can cause them great anxiety. Especially if it is an unfamiliar place. They can tolerate shopping malls for short periods of time because the mall is a predictable routine for us, and I still have to bribe them with a toy. Last holidays, I wanted to take them to a historical village. Fun but educational thing, like stepping back time. It took me TWO HOURS of meltdown to get him into the car. Once there, I had to carry him around with him holding on for dear life.
The thing is that, in summer school hols, everywhere is busy. Even the familiar, predictable outings become a battle of massive proportion like a military manoeuvre.

Swimming pool today. James has become fearful of the womens change room; he doesn't want anyone, well women to be precise, to see him naked. We went at the weekend with Stephan, and he was terrified. Thankfully, Stephan was there to take him to the mens change room, otherwise he would have gone into full blown Autistic meltdown. (I'll talk about those later). So today, Stephan is at work, there is only me, and there is only one family change room.  So I talk to him, tell him that if he wants to swim, he will have to come into the ladies. He really wanted to swim, so off we go. It was busy. Loud. They are noise sensitive. They spend most of their time underwater. When it was time to go, I talk to James again and remind him about the change room, and promised him an ice-block if he was brave. Lo and behold, how pleased am I that he dutifully follows me in!!!! "Where's Ben?" he says. Not here. Back out we go and Ben is cowering in the corner. For the love of God!!! To think that all I used to be worried about when I went to the pool is how I looked in a bathing suit! 

So, we continue to find things to do. We live in the City of Sails, we are surrounded by beaches. James decided that he doesn't like beaches anymore because he is scared of dogs and of cutting his toe on the rocks (Ben cut his toe a few months ago, lots of blood, hence the phobia). I bought him some aqua shoes but he still won't go. Funny because last school hols, he wouldn't do anything BUT go to the beach. I am thinking that  by now you may be getting a hint the flavour (OK, so I just watched British Bake off) of the obsessional interest. Plants v's Zombies. It's a computer game. To be fair it is actually quite addictive, I've played a bit myself in a vain but desperate attempt to beat Stephan, to no avail, he is really scarily good at it..........But James plays it ALL THE TIME. The accompanying music is driving me to utter distraction.They make play dough Plants v's zombies, Lego, he WOULD NOT STOP asking me for a plush toy character of a plant from the game which I ordered to literally save my sanity. Autistic obsessions. He has them all the time. Last year it was insects. He was going through a really bad patch in the early part of last year, and there were days that he he literally couldn't get into his special needs classroom. Just couldn't tolerate it. His teacher aide would spend the day hunting for insects with him around the school. Or taking him to the library to research insects. His written (I say that loosly, he hates writing, at the time, he was doing most of his ccomprehension on the computer) work was about insects. Oh, the slug one was the worst! His teacher banned him from bringing them into the classroom, and proceeded to find that he had hidden them everywhere! I found him putting one in his bed "because the slug was tired"!! Seriously!! God, I was glad when that one ended. His level of dependency on obsessional objects depends on where his anxiety is at, but it's always there. Like I said, plants v's zombies at the moment.

Time for bed. I feel like I am moving onto the hard part of James, and I'm too tired to write about it now, and is deserving of a whole blog to itself.

WTF will I do tomorrow? Might take a trip into Stephans work. They miss their Dad when he is at work, he plays with them tirelessly with cool stuff and is Master Of Lego Building. He is showing them the Star Wars movies, and talks them through it so that they understand. I am a poor second best, I hate Star Wars, and I am terrible at Lego.  He really has endless patience with them, and they worship their Dad, especially James. Ben is a Mummy's Boy, but James belongs to his Dad. So, on that note, I need beauty sleep. Hope you enjoy reading my blog xxxxxxxx 

1 comment:

  1. wow Jenny, this is pretty powerful. Well done you for sharing; this is a great way to reach and educate people. xxx