Parents of children with additional/special needs need stamina. We know that sometimes things can take a long time before we can see any positive change.
We need to be resilient, in this for the long haul, for life! But sometimes we see a breakthrough with our child that energizes us again, that renews and refreshes us, and sometimes it’s a breakthrough that we’ve been hoping for, for years!
Whatever your views on Winston Churchill, and I write this during a time when we are re-evaluating many historical figures, he had an uncanny ability with words especially during times of national crisis. He once said something that might have been written for parents of children with additional needs, “……never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense.”
We strive, we struggle, we learn, we love, we never give in. Even when everyone else says we should… never, never, never, never. And so it was with James and the garden...
(James on his swing circa 2013 when James was about 11. The swing is now gone and the decking area is covered and has a table and chairs, see story below).
James loved his garden swing when he was younger, as you'll see from above; it was his favourite thing in the whole world. Every day he would be out in the garden swinging back and forth with great gusto, delighting in the speed and the sensation. When he was about 12, in mid-swing and at high speed, he accidentally fell off, hitting the ground hard. Fortunately, other than winding himself badly and giving himself a few grazes, he was physically unscathed. Mentally, however, things were different.
James refused to go on his swing anymore, he had become afraid of it due to his fall. More than that, he refused to even go into the garden. We took the swing down, showed him through the window that it wasn’t there anymore, but he still refused. Over the following three years, James might have visited the garden maybe three times, usually briefly and to collect food if we were having a barbeque outside. He didn’t enjoy the garden at all anymore.
Then, aged 15, Epilepsy entered James’ world, wrecked his confidence, and he rapidly closed down going out of the house. James stopped going to school, stopped going out to his favourite places, stopped going outside the house other than for a few night drives for a long 14 months. Nearly two years ago things changed again; James had rebuilt enough confidence to return into the wider world, enjoying trips to his favourite places, even returning to school. But he still wouldn’t come out into our garden.
It had been well over three years since James had come into the garden at all, three long years where we had tried, and tried, and tried again to support and help James to come and enjoy this lovely space; to share it with us. James always refused, but we never gave in, never, never, never.
And so, last Sunday, James was finally ready to come into the garden again. As with so many breakthroughs, it had to be when he was ready and it came unexpectedly. I was heading out to the garden laden down with bird food to refill the feeders, and I invited James to join me. I even sweetened the deal by offering him an iced gingerbread dinosaur! James declined, and stayed on a sofa in our lounge with his iPad.
As I refilled the bird feeders, using a small chair down the side of our house from the back door, I could hear James, but he was louder than if he was still on the sofa, he must have moved. I returned to the back door to find James stood just inside, giggling. I still had the iced gingerbread dinosaur so showed this to him, he giggled again and handed me his iPad and tough chew bar that goes most places with him.
(Photo above taken when James was refusing to leave the house at all in 2017-18. We used tables with his favourite things to try to get him to come outside; a few times he made it to the table with Winnie-the-Pooh. In the story below you can see where the back door is, the path at the side of the house, the corner at the bottom, and where the rest of the garden is.)
What followed next was like our very own version of the ‘hokey-cokey’… James put his left leg out of the door, then drew it back again, then out again, then in… In, out, in, out (he probably shook it all about too!), but finally he took a step out of the door, then the right leg, he was out! Gradually, we worked our way down the side of the house, round a small patio area, down some more steps and onto a covered decking area where the rest of the family were. James made himself comfortable in a garden chair, requested his iPad, chew, and the ‘prize’ of the iced gingerbread dinosaur, and started looking around wide-eyed at a garden that had changed hugely since he had last spent time there. The rest of us were in shock… delighted, emotional, but in shock!
(James sat on the decking which had once been where his swing was, but now has a covering, some chairs and a table. His sister Phoebe looking on in disbelief!)
We stayed there for about half-an-hour, during which it rained (thankfully we were under cover), and James was clearly delighted to be there. We look forward to him choosing to join us there again next time… maybe not leaving it so long again!Whatever the challenge for your child, no matter how hard it is, how long it has taken to see any breakthrough, never give in… never, never, never, never give in… For their sake and yours, the results are worth waiting for!
Image rights: Photo’s and video of James © Mark Arnold