…And it’s Back to School I Go

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I am currently attending a parenting course. Now there’s a sentence I never thought I’d write.

Jeremy Kyle connotations notwithstanding, there is a good reason for this.

Six months ago, I was sitting in the paediatrician’s office, being given the news that James was to be diagnosed with Autistic Spectrum Disorder, and experiencing a strange mix of feeling shell-shocked and relieved. Now that he had been officially ‘rubber stamped’, I could go about getting James the support he needed at school and beyond, with the weight of an official label behind me. But at the end of the day, no parent dreams of the moment when you are told your child has a disability, even if it is a fact you already know.

At the end of the meeting, I was asked if I had any questions. I nearly laughed out loud. ‘How long have you got?’ I thought grimly. My whole life felt like one big question. Would James be able to go to a normal school? Would he be able to live independently, work, meet someone, have children of his own?

Accepting that the paediatrician did not possess a crystal ball, I kept my questions to the immediate. My biggest concern, I responded, was James’ behaviour. I was holding my hands up: I don’t feel like I’m in control of this child. Help!

Anyone that has spent any time with James will testify that he is a delightful little boy. He has an infectious belly-laugh, the most gorgeous smile, an angelic singing voice and a genuine innocence which it makes it nearly impossible to be angry with him. Even the time that he got hold of the pump soap and spread it all over the wooden floor so that I slipped over and almost broke my leg. (Note that I did say nearly impossible.) So you can imagine that, having to admit to a room of professionals that my son’s behaviour sometimes frightens me was rather upsetting.

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James was a very passive, ‘chilled out’ little boy until around the age of two. With hindsight, I can see that up until then he was very much in his own little world. But suddenly, as other people started to encroach upon his consciousness, I don’t think he had a clue how to react.

Adults generally didn’t invade James’ personal space or get in the way of his fun, but children liked to get in his face. The typically developing two year olds around him were simply doing what came naturally, and starting to play out the earliest forms of peer interaction. If they got a bit too close for his liking or merely ran towards him a bit too boisterously, he began to lash out.

James’ childminder at that time commented that ‘James sometimes pushes others as a “greeting”.’ An interesting choice of words, and they have always stuck with me. It was clear to her, as it was to me, that James’ behaviour was not truly malicious. The idea of a ‘greeting ‘ was alien to him, but like a child encountering any new experience, what came across in his manner was a sense of bewilderment. What are these other people doing here..? What are they for?

Perhaps they simply freaked him out, so he pushed them away in the hope they would leave him alone. Or maybe, he viewed them as merely another toy that needed to be pressed to make a loud noise. Even now, I often can’t identify the trigger for his ‘aggression’, which makes it difficult to predict and even harder to tackle. But either way, I genuinely believe that he does not set out to hurt others. How can he, when he doesn’t possess the empathy to comprehend what ‘hurting’ someone even is?

This trend in James’ behaviour became more marked with the arrival of Sam. As a tiny baby, he mostly went un-noticed by his elder brother, although James did ‘greet’ him into the world by giving him a slap, which wasn’t getting off to the best start.

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Sibling jealousy is hardly a new concept- anyone with more than one child will almost certainly have witnessed it. I think for James it was doubly hard when Sam came along; he finds it difficult to tolerate other children at the best of times, and here was one that had staked a claim on his people, never mind his toys and personal space. As Sam grew older and truly made his presence known, the pushing and hitting began occurring with ever increasing frequency.

Sam displays no obvious signs of being on the spectrum, and clearly adores his brother. And I think, in his way, James has gradually learned to accept that Sam isn’t going away. But frankly, looking after them both together requires psychic powers, about six arms, and eyes in the back of your head. Forget having a shower or tidying the house, ever. Sam, desperate to interact with James, persists in trying to play with him and never seems to learn from the daily assaults.

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Despite my best efforts, sometimes I just don’t manage to react fast enough. Which is exactly what happened, shortly before James’ diagnosis, one morning when I was bathing James while Sam was happily amusing himself in the playroom. I hadn’t managed to shower myself yet, and I reasoned that it would save both time and water if I just climbed in with him.

One minute, James and I were enjoying a nice sing-song and squirting each other with bath toys; the next, he abruptly decided that he’d had enough of his bath and decided to leap out and run, dripping and naked, onto the landing. Soaking wet myself, I quickly followed and busied myself wrapping a towel around him, but I hadn’t registered that Sam, overhearing the commotion, had decided to climb the stairs and investigate, whilst clutching the iPad.

Immediately I felt James tense up, preparing to lash out, and instinctively I gripped him tightly and attempted to pull him back.

‘It’s ok,’ I said soothingly, ‘it’s ok. Sam is allowed a turn on the iPad.’

The thing is, James is really strong for a four year old. I’m not sure exactly what happened, but suddenly he was free of my grasp. Before I had time to react, he made a grab for the iPad, simultaneously giving Sam a hard shove. Like a domino my poor baby fell straight backwards and toppled down the entire flight of stairs, landing in a heap at the bottom.

Any parent who has ever witnessed their child suffer a beating at the hands of another will know that it induces a primal protective instinct. You scan the area furiously, thinking that their parent had better be coming to deliver a severe telling-off and enforce an apology. But when that parent also happens to be you, it produces a confusing emotional conflict.

In that moment, the anger I felt towards James was almost palpable. Yet as I rushed to pick up a hysterical Sam, I noticed James out of the corner of my eye nonchalantly sauntering off with his prize, and realised that anger was pointless. He didn’t have the slightest concept that he had done anything wrong; it was purely an act for functional gain. The iPad belonged to him, so he had removed Sam as he would any other obstruction. He didn’t have the imagination, or the empathy, to understand the consequences of his actions.

You hear people joke that toddlers bounce, but I never realised that it was actually true. Astoundingly, Sam was completely unharmed. I on the other hand was a nervous wreck, imagining what might have been. Which is why two weeks later, I was beseeching the medical professionals for some specialist support from CAMHS (Child and Adolescent Mental Health Services). I felt at a loss as to how to stem James’ violent behaviour when he just didn’t understand that it was wrong.

It was at this point that I truly grasped what other people meant when they talked about the red tape and jumping through hoops that is necessary to actually get any support from the local authority for a disabled child. For starters, as a mere mortal, I could not approach CAHMS myself to ask for support – I had to be referred by a medical professional. That in itself I could deal with, but it then transpired that anyone wanting behavioural support from CAHMS first needed to attend a fourteen week parenting course, the next of which was starting in January. They would try to secure me a place on it.

‘So you’re saying,’ I replied, ‘that essentially, you need to make sure that James’ behaviour isn’t the result of my crap parenting before you’ll offer me any help?’

It was an emotional day.

To be fair, I admit I was being a little over-sensitive. I completely appreciate that everything costs money and that not everyone can be offered specialist support for their child’s behavioural issues. And as it turns out, the course is actually pretty good; it has taught me that we can all stand to ‘up our game’ when it comes to parenting. It is so easy to forget to praise, when praise is actually far more effective in promoting good behaviour than constantly shouting ‘no’ at the things you don’t want to see. Most of us are guilty of expecting our offspring to instinctively know how to behave, forgetting that young children are naturally quite self-centred and therefore unlikely to co-operate without incentives; i.e. praise, rewards, and positive attention.

What I fall out with is this idea of a one-size-fits-all solution for behaviour management. Don’t get me wrong, I think these parenting tips are great – but I’m sceptical that you can just apply them to a child with autism and expect them to respond just as a neuro-typical child would.

I can offer James praise and rewards until I’m blue in the face, and he’ll happily accept them, but he lacks the emotional understanding to deliberately seek them out by replicating the behaviour that just earned him the reward. He can’t make the connection. And even if he could, well… praise just isn’t incentive enough if Sam is standing between him and the iPad. The iPad is going to win every time. (Admittedly, I’m still not sure what the answer actually is – I’m hoping the miracle workers at CAMHS can tell me that one, assuming I ever get to see them.)

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Still, I have quickly learned that in order to get anywhere with the local authority, I have to play the game. And if that means turning up every Wednesday to have my homework checked (hmm, not patronising at all!) then that is what I shall do. With any luck, I’ll get a certificate at the end to prove that I’m officially a highly skilled parent – it may come in handy on my next trip to Waitrose.

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3 thoughts on “…And it’s Back to School I Go

  1. Holly, this is truly awesome. For what it’s worth, I really do feel your pain. I was told I would develop a thick skin and be able to withstand the stares and glares from other parents. To this day, that has never happened. But I believe that James will become more comfortable in his own skin as he develops, and that the traumatic experience of somethig as simple as a trip to the supermarket will lessen. Accept help wherever you can, and don’t forget to take care of yourself as well as your beautiful boys!

  2. Holly I can totally relate to this post . We were reported to social services because the neighbours heard screaming and banging. It was my 3 year old screaming because he couldn’t talk and the bangs were where he was throwing things in temper. When they met the family they realised it was a false claim.

    Your doing a great job, you will learn more about James world and his quirks. Don’t be so hard on yourself, parenting a child with additional needs is hard enough . Hugs lovely xx

  3. Hi holly, I love your blog, I’m so glad i found it and I can so relate to your posts, Unfortunately we have had little help from CAMHS except for the referral to the 14 week long parenting course and the referral to the ASD pathway. I hope someone there is able to give you the help you are after. The most helpful professionals we have found so far are Occupational Therapists trained in Sensory Integration therapy. They see to have a good insight into the underlying causes of behaviour. In some areas you can access their help on the NHS it might be worth you having a look into it.
    I’m looking forward to reading more
    Sarah x

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