Kate E. Reynolds

  • Back in a new routine.

    Recently, I’ve been extremely unwell. As a single mother, I’ve always managed my son’s autism using social stories. Like many single parents, I’m sure, I live under the misguided thought that if I were ill or otherwise unavailable, there would be time for me to prepare my son, write out a social story and help him understand what was happening. Yet, despite my knowing I would be unwell due to treatment, I wasn’t prepared – or prepared enough- to help him sufficiently to survive without my daily input. Jude became angry with anyone else trying to make him food or do his bedtime routine. This was largely because in my head I know my son’s routine intimately; I can run through it in my head with ease. Yet at the same time, it isn’t so much a routine as a deep knowledge of my son, which adapts according to what kind of day he’s had at school, how tired he is and how both those factors affect me.

    Perhaps I created this entire problem by fighting against the notion that all autistic children should have a strict pattern to their days and different routines should be discouraged. I remember the early days after Jude’s diagnosis, being told that routine was almost the god of autism, that breaking it, that fiddling with my autistic son’s daily cycle of events would distress him, even scare him. I fought hard against this. On a personal level, I couldn’t mentally deal with one set pattern of my day, which is effectively what was being asked in the ‘set routine’ discussions about my son. His routine would mean I would have a routine. The second reason was that I felt I was creating a robotic response from Jude, if, indeed, he couldn’t manage without a set routine. On the occasion when that routine wasn’t possible, surely we’d be subject to a much more aggressive response because it was so unexpected a scenario. Finally, if I allowed his pattern of expected events to dominate the household, my daughter’s needs would be subsumed beneath his needs and our entire existence would be a cap-doffing exercise to Jude’s needs.

    As things transpired, people would comment on how adaptable Jude was ‘for an autistic child’. It was stated in complimentary and surprised tones. Some other autism mothers even wistfully spoke of their desire for a similar outlook in their child. I listened as they told me how difficult things were, if there were the tiniest infringement to their child’s routine. One family’s activities had been so moulded by their son’s need for routine, that at the age of 14 they’d finally found him a place at a residential school so they could claim their lives and their relationships back. I felt I’d made the right decision.

    Yet I find myself now in difficulties. I feel I’m wading through oil. The worker who arranges Jude’s puny amount of respite (4 hours per month, for me to spend time with my daughter) suggested that I write out his bedtime and any other routines so that my family and any caregivers would know what to do with him. This would reduce his anxiety and annoyance when people ‘got it wrong’. I nodded obligingly. How could I tell this autism professional that there was no routine, that bedtime patterns depended on tiredness (that would alter the bed time itself), Jude’s preference about whether or not he wanted a bath or a story and how exhausted or otherwise I was? It felt tantamount to admitting a form of emotional abuse, such is the emphasis given to routine.

    I thought about committing the lack of routine to paper. I scrutinised the sheets of ‘if Jude wants this…’ and ‘if such and such happens’ and concluded that it all seemed terribly haphazard. I decided that relying on social stories was the way forward and that any caregivers who’d worked with autistic children would be used to this form of communicating information. I was wrong. Caregivers told me of their embarrassment that their ‘artwork’ might be examined by me afterwards, that Jude wouldn’t understand their rudimentary attempts at drawing events. I began to wonder how ‘pin men’ could prove such a challenge. Fortunately my son’s reading abilities proved helpful. If carers couldn’t draw, they could write! We agreed on a series of NOW…such-and-such will happen, THEN …such-and-such, LATER such-and-such. It worked. Jude was still upset that I was upstairs in bed and not helping him but he became more able to deal with that aspect when we ticked off my ‘sick days’ until I’d be well. After my third treatment, he seems adapted to the idea that I have planned sick time and will recover; we have a routine of sorts.

    In future I need to revisit telling him about illness and medical treatment. The National Autistic Society has some useful guidelines on this subject: www.autism.org.uk

    And maybe I can get his carers to overcome their embarrassment about drawing!

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Kate E Reynolds - blogging

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