James could visit a small number of familiar safe places but couldn’t go into anywhere new that we have started to visit since epilepsy arrived. Last week, for the first time in five years, that changed.
Most of the time a change of plan can be inconsequential; it may be hard in that moment, but overall the effect of that change of plan can be minimal. Occasionally, though, a change of plan can be transforming; it can have an unexpected and lasting impact that can alter everything. This is the story of one such event…
James is 20 now, but a little over five years ago epilepsy arrived, adding to a list of diversities and additional needs that included Autism and Learning Difficulties. For James, this was a more profound event that we could have imagined at the time, as the onset of epilepsy sparked overwhelming feelings of anxiety for him, especially relating to leaving the house. At first James was unable to go outside at all for 14 months, then a breakthrough helped him to be able to return to some familiar, safe, places that held positive memories [see link to the story of this at the end of this blog]; but he couldn’t go into anywhere new.
That is the way it has stayed until last week; James could visit a small number of familiar safe places including the farm shop and the café but couldn’t go into anywhere new that we have started to visit since epilepsy arrived. Last week, for the first time in five years, that changed…
We took James to his weekly craft session at the local community centre, a routine we have had in place since September. Due to James’ anxiety about new places, he hasn’t been able to leave the car when we get there, so the team have wonderfully included James by bringing the craft session to him in the car. We’ve sat in the back of the car making collage pictures of dinosaurs, elephants, and Christmas trees; we’re created lions, sharks, and hedgehogs; each week a tray of resources has arrived, and each week James has sat in the car to craft something wonderful; we’ve even made a calendar of his creations. But it’s been in the car, not in the classroom… until last week, until the breakthrough.
[photo_footer]James’ 2023 Calendar
Last week we rocked up as usual, parked as near to the entrance to the community centre as we could, and used the technique we’ve been trying for a few weeks to coax James out of the car. The idea is to have a small folding table that we put up about three feet away from the car next to James’ door. On the table we put things that James likes, some iced gingerbread, some crisps, his Minion nightlight, a pot of PlayDoh… the hope is that James can be brave enough to take a step from the car to collect something from the table, before returning to the car. The longer-term plan is to move the table further away each time, a little nearer to the entrance to the community centre…
[photo_footer] James stepping out of the car
We’ve had some positive results, James has had a couple of weeks when he has been able to take a step or two to claim his prize, but last week took us all by surprise, I think James included! Last week James had been reluctant to take a step from the car, he had stretched an arm out as far as he could reach (unsuccessfully) and he had gestured for me to get something for him (I wasn’t playing ball) and so we thought it was going to be an unsuccessful week. My wife, Clare, went in to see the class leader, Donna, to ask her to bring out the craft activity for the week, while I got in position in the back of the car next to James ready to support him to do the craft. Donna and Clare returned and passed the tray with the craft activity into the back of the car, but there had been a mistake, they had brought the craft activity we had already done the week before, a lion! We all realised the error together and Donna and Clare returned to the classroom to find a new craft activity.
While we were waiting, I took the opportunity to encourage James to step out of the car to the table to collect something, this time while I was still inside of the car (we hadn’t tried this before). To my delight, he stepped out and claimed his Minion nightlight; then he did it again (a tough chew), and again (a Playdoh roller)… this third time he stood by the table looking towards the entrance to the community centre. I had to pull myself together and act fast!
[photo_footer] James stood by his table of favourite things
Sliding out of the car on James’ side, I gently encouraged him to walk forwards towards the entrance, a short journey that we have previously videoed and shown to James. He kept going and soon we were at the automatic doors; on we went into the foyer area where James had a little wobble, getting ‘stuck’ for a minute before Clare’s appearance ahead of him helped him to move on again. Before we knew it, James was in the classroom, sat at a table. The first time he had been inside anywhere new for over five years!
[photo_footer] James making his craft picture in the classroom
James had a wonderful time creating a craft picture of a dragonfly, he was happy and engaged throughout, and if anything, we had more of a challenge getting him to stand up and come back out to the car an hour or so later. We were amazed, thrilled, proud of James, and slightly in shock at what had just happened. We know there will be setbacks, this was a mountain top and there will be valleys, but the view from that mountain top last week was magnificent!
I know families like ours whose children (of any age) have been housebound for years or have not been inside anywhere new for a long time. James’ story gives these families hope; hope that their child may be supported to make a breakthrough too, hope that there may be a mountain top for them to enjoy someday as well… maybe sooner than they think!
Never give up, always keep trying, and if the unexpected happens as it did for us, take it as an opportunity; for us, a change of routine created the chance for a breakthrough, maybe it will for you too. For us, it broke through five years of anxiety for James; what could it break through for your child?
Keep on keeping on…
Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.
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