Last week James needed his hair cut. A simple enough task you might think, but in James’ case it is one of very many tasks that require a routine to be known, and more importantly rigorously followed, in every aspect. You see, James is autistic, has learning difficulties, epilepsy and anxiety disorder.
Firstly, there is the location: he sits on the wooden bench in our hallway at home. Then there is the identity of the ‘barber:’ me, ably assisted by Clare (his mum) who keeps all of the clippings out of his face. Then there is the ‘distraction:’ James’ iPad, fully loaded with films, his favorite YouTube clips (currently roller-coaster rides) etc. Finally, there is the clipping process itself—Grade 4, by the way, for any aficionado’s—which involves starting at the back, then the front, and finally the most difficult and suspense filled part of all—around the ears.
James has his hair cut like this about four or five times a year. As long as we keep to this routine, all is fine. Any change would be enormously difficult for him, and therefore for us. I have visions of him going in to school with Grade 4 at the back and front but long at the sides over his ears!
The reason I share James’ haircut story with you is to illustrate that routine and familiarity are fundamentally core to the coping mechanisms of many children and young people with additional needs, particularly—but not restricted to—Autism, ADHD and other similar conditions. So often, this is misunderstood by adults, or just plain missed, with awful consequences for the child/young person.
I heard a story this week of a young person with ADHD who, in order to cope with change, needed to stand in the doorway of a room he was entering or leaving and tap several times on the door frame. He did this wherever he went, including at school, but often 30 pupils trying to leave the classroom for their break together were not interested in waiting for him to complete his routine, and would push him through the doorway. As a result, he lashed out in desperation. This was interpreted as violent behavior, and he was excluded from his school and sent to a Pupil Referral Unit for young people with violent behavior issues.
Photo credit: Mark Arnold.
Now imagine if the school staff had been better trained. If they had had a system where that young person could leave 30 seconds before everyone else, or leave after everyone else—whatever worked best for him—so that he could complete his routine. If they had understood why he needed to do that, if they had understood other ways in which he coped with change, with a busy school full of pupils and noise, with the overwhelming of his senses on a daily basis, perhaps there could have been a better outcome for him and for the school, and a better strategy than sending him to a Pupil Referral Unit.
The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist in our church-based work as well. I remember a youth leader being put through to my phone one day whose opening line was, “I’ve got this boy in my group, he’s got ADHD and he’s a nightmare. What can I do to exclude him?”
I took a deep breath and asked the leader to explain to me what had happened. It seems that during the group’s ‘talk time,’ this boy had started to get a bit unsettled, showing early signs of anxiety and stress. The leader had told him that as he couldn’t sit still and listen, he wasn’t going to get snack time this week. The boy liked snack time—who doesn’t like snack time!—and so things ratcheted up a notch or two. The leader responded by saying that as the snack time penalty hadn’t worked, the boy was suspended from club for a week and so couldn’t come next week. Next week was party night, and the boy had been looking forward to it immensely, so things then really kicked off and he was sent home. (I’ve summarized a much longer story).
I rewound the conversation with the leader asking him to identify all the times that opportunities had been missed to support this young person, to recognize his needs and to help him to manage his stress and anxiety. There were many. The leader finished the call saying that he was going to call the parents of the boy straight away, to apologize and invite him back to the party the next week, by which time a strategy to support the boy would be in place, and known by the whole team.
All of these examples show us that taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope—and sometimes fail to cope—and why; to help them understand that we are there for them, to help them and to support them; all of this is so vitally important. So often, the challenging behavior that we might see and wrongly judge them for, is a final cry for help, when we’ve missed so many other pleas for help and support already. It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming sensory overload.
Surely, however we look at this, we must put the child/young person first: do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope. We should put their needs above our own, with us doing the adapting rather than expecting the child to adapt.
That’s why, in about three-months’ time, I’ll be sitting on the wooden bench with James (always on his right), clippers in hand, with roller-coaster rides on his iPad. I’ll be praying that I can get the side bits of his haircut done so that he doesn’t go to school the next day looking like he's been run over by a lawn mower.
Haircut, sir?
Mark Arnold is the Additional Needs Ministry Director for Urban Saints Church, Luton, Bedfordshire, UK. Follow his writing at https://theadditionalneedsblogfather.com.
