Yak Yak Dad

Discovering the world with my autistic son

Month: November 2017

There’s no such thing as a dragon

Last night I read a book to Christian called “There’s No Such Thing As A Dragon” by Jack Kent. He obviously enjoys the story and the pictures but it struck me how insightful the story really is.

The premise of the book (spoiler alert) is a boy, Billy Bixbee who wakes up one morning and discovers a tiny dragon in his room. He tells his mother about the dragon who in no uncertain terms says to him that there’s no such thing as a dragon. The longer they ignore the dragon, the bigger it grows until it runs off with the house. It doesn’t go back to being kitten sized again until they pay attention to it.

It struck me how often we ignore issues in our lives which then grow out of control and all we need to do it pay attention to it. This is I think is applicable to autism too. Though we are still finding it hard to recognise which issues are down to Christian’s autism and which are him just being a boy, when we pay attention to the issues they seem to shrink and become manageable again.

It does feel like there are many issues around ASD are tiny little dragons that are manageable, as long as you pay attention to them.

Building a framework for action

One thing I’ve neglected to mention is the I have ADHD. It’s something I was diagnosed with as a child and is one of the lucky few (yay!) that carried it through into adulthood. Is ADHD and ASD related? Could it have made Christian’s ASD more likely (OMG it’s may fault! 😃 )

I was very lucky to have loads of help to deal with my ADHD. I have systems and ways of organising my life that help me cope and get stuff done. It basically comes down to “write shit down because you will forget otherwise, thicko.”Because I need to write stuff down in order to process information I’ve become a bit reliant on creating structures and frameworks, so I will have to approach Christian’s ASD in the same way.

Note that this is a first draft and will expand or change quite a lot as I add stuff into the framework. This is a constant work in progress but I think it will help me a lot to keep my thoughts organised.

I’ve decided to arrange the framework into 3 sections, which basically comes down to learning, doing and talking. The three main sections are:

  • Research Under this section I will list topics, authors or speakers I want to check out.

 

  • Action point
    This section will be things I want to do with Christian to help with his development. Ideally this will be based on research from the list above but this may not always be the case.

 

  • Activism
    I hope to share what I’ve learnt as much as I can. I’m not sure what shape it will take yet, but I think repurposing all the information I gather along the way will be a great way to cement the learning and hopefully be of use to someone else too.

So there you have it. It may change. It may grow but this is a quick snapshot of where I am at the moment.

Finding our feet

The last few months have been a series of big moments. The diagnosis was a big moment. Coming to terms with the diagnosis was a big moment. Getting Christian into our first choice of school was a big moment. His first day of school was a big day. In between the moments, however, it can feel a little like being tossed around by the tide. Life washes us from side to side with our toes touching the bottom every now and again. I think I’ve prepared myself to embrace this feeling for the foreseeable future.

Another big moment was watching Chris Packham’s documentary, which contributed in no small way to us realising that we need to get our act together.

When I started doing research the first thing I learnt is how little I knew. I realised that there is a whole world that I need to get to know. A world that my son will be living in and that I will need to get familiar with pretty damn quick.

At times like this I realise how lucky we are. We live in the best borough special needs provision in London. My sister has an autistic child and spends most of her time helping parents of disabled children, my father is an exceptionally accomplished medical professional, and we have access to all the information in the world at the tip of our fingers. Yet we feel lost sometimes. Such is the nature of the broad ASD spectrum that it is quite a task figuring out what Christian’s specific issues are and how do we deal with it. How do we know when he’s just being a child pushing boundaries and when is his behaviour a result of his ASD.

We don’t know yet. We will figure it out though.

I’m working on a framework to structure our research and actions in an organised way so that we make sure we deal with it effectively. I aim to share the framework on this blog over the next few posts.

Walking a well trodden road for the first time

Somewhere deep inside of me I’ve always somewhat looked down on people who feel compelled to start a blog as a way of dealing with some kind of personal struggle or tragedy. I don’t really know why though, seeing as how I’m the kind of blabby idiot who needs to discuss every fleeting thought that pops into my silly little head with whoever is within earshot. Whether they want to talk to me about it or not.

Lo and behold here I am. Blogging like the vegan hipster millennial jackass that I’ve always deep down know I am but was afraid to admit. I suppose that I had to deal with my own hypocrisy sometime and now is as good a time as any. As much as I would like to pretend that this blog is to share information or raise awareness or some such noble goal, it’s not. I have always found that the best way to organise my thoughts, process information, and help me deal with what life throws at me is to put pen to paper. So dear reader, to be very clear, this blog is not for you. It’s for me. The purpose is to help me, but if you can find some benefit from it, it’s a happy accident, not the goal.

Now, let me discuss how we got to this point.

In May this year (2017) or eldest son, Christian, was diagnosed with Autism Spectrum Disorder.

Our path to the diagnosis was different from many because when we first sought help for Christian, the idea that he might be autistic never even crossed our mind. It’s not that we didn’t know about autism, my niece is autistic and my sister has been doing a great job not only dealing with her daughter’s autism, but also helping other parents with disabled children. So we knew, we were aware.

What we were not aware of was how wide the spectrum really is.

My niece has real difficulties. Christian is not like that at all. He is a happy, healthy, and friendly boy who engages with people and is not at all what you imagine an autistic boy to be. Never in a million years would we have suspected that he is autistic.

At around 2 years we started to get a bit concerned that he was not talking yet but we didn’t think it was the end of the world. We realised that all children developed at different rates, and we just had to be patient. It this point things did start to het a little uncomfortable, especially around other children. Christian is a big boy. The product of healthy Afrikaner stock, he’s 98th percentile in height and weight, which made him look much older than he really was which compounded the perception of his delay even more. Well meaning people would talk to him and be a bit offended when he doesn’t answer back. Every time we had to explain that he doesn’t talk yet felt like a vice on our hearts gripping a little tighter.

Then the biting started.

Though Christian has severe issues with understanding social communication, he still craves the company of other children and he got upset and frustrated when he couldn’t communicate with them. As a result he often lashed out and bit other children. It was at this point that we decided that we would seek help to see if there is anything we could do about his delayed speech.

It takes a while for the process to run it’s course and whilst we were waiting for the NHS funded services to do an assessment we took him to a private speech therapist. We thought with minimal professional intervention he would quickly catch up… It didn’t quite work out that way. Never mind, we thought, he just needs a bit more help and his speech will catch up.

In April 2016, Christian was 3 years and 3 months when we saw the consultant paediatrician. That appointment would change our lives for ever. See, most parents realise that their children are autistic, but Christian is not at all like any other autistic child, so we never suspected autism. The paediatrician said that they suspect he either has autism or a global developmental delay, and that the intervention for both conditions are the same so they will start as soon as possible. We were stunned. She asked us if it was the diagnosis we were expecting. I think she could guess the answer by the pure shock on our faces. We never even considered autism.

We came away from that assessment in a bit of a daze. They said it would take a year to confirm the diagnosis and that they would start intervention as soon as possible by placing him in a nursery that caters for children with his special needs. This would also have the added benefit of regular assessment to get to the bottom of his issues. Looking back on it now, it was such an amazing turn of events because the nursery school’s work started bearing results almost immediately.

Now I have to be honest. I didn’t believe Christian had ASD. I didn’t believe it when they said it in April last year, and I didn’t believe it when they finally diagnosed him after a year of evaluation. I was in denial. I kept thinking they made a mistake. I kept thinking that it’s probably just a delay in his development that he will grow out of. I couldn’t get myself to apply the label to Christian. I couldn’t say the words “I have an autistic son.”

For months after the diagnosis I managed to be angry at the world for something I’m still in denial of, which I think is quite a feat. I lashed out by having mean spirited debates about any nonsense topic that crossed my mind with close friends to the point where I had alienated most of them. Slowly as it dawned on me that I will have to come to terms with the situation I started reading more about autism. As I started to get a better understanding of ASD I began to get closer to accepting Christian’s diagnosis. I started to understand that autism is part of who he is and many of the things that makes him the wonderful, amazing boy he is, is down to his autism, not in spite of it.

I love my boy with all of my heart and I want to be the best dad I could possible be so that he has every opportunity in life.

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