It’s been quite a year! As we sat around the meeting table yesterday for yet another ‘Child In Need’ review meeting, it was almost impossible to believe the progress that James has made in the past 12 months. Stories flowed from social worker’s, school staff, CAMHS team members… all thrilled at how things had changed…
A year ago, our son James (autistic, learning disability, epilepsy), hadn’t left the house for 10 months; not to school, not to the shops, not to church, not to anywhere. We wondered if he would ever be able to leave the four walls of our home, James’ safe place, again. Our hearts were breaking as we received less than helpful reminders from Facebook about where we had been as family a year before.
James’ world had changed, seemingly for ever, with the arrival of epilepsy in 2017, causing him to withdraw into his safe place at home. School had stopped first, then trips out to his favourite places, then going outside at all. We briefly managed to get him out for a few, short, evening drives, but he soon started to refuse these too. Even stepping outside of the back door to collect some of his favourite things from a table was really difficult for him.
In May last year I wrote a blog post that described how we were doing as family as we journeyed with James through this difficult time… ‘Additional Needs Parents – Disrupted, Resilient, Vulnerable, Broken, Loving’… It articulated clearly the way we were all struggling, but that in all of the struggles we were still bound together, in love:
It also references my favourite worship song, Cornerstone, a song that has sustained me and inspired me along this long journey with James: “Christ alone, Cornerstone, weak made strong in the Saviours love. Through the storm, He is Lord, Lord of all.” I wrote these words then, and they still hold true for me today… “It is Christ alone, alive in us and working through us, especially in the storm, that binds the disruption, resilience, vulnerability and brokenness together, and makes something beautiful, and strong, out of it all… Love.”
A year on, and James was downstairs in his classroom at school as we held our review meeting, engaging with the staff and his fellow students as we shared about him, taking part in class activities as we discussed his progress. James now attends school three days a week, starting with lunch and staying for the afternoon. He happily heads out for trips to the shops, especially his favourite farm shop, or to the little café at Compton Abbas airfield, where we watch the light aircraft take off and land while we eat cake or millionaire’s shortbread, and drink tea or lemonade.
In June last year, Facebook sent me a reminder from 12-months before of when we had been there last… Pretty much the last time James had been anywhere. Around then, I wrote this blog post… ‘Parenting A Child With Additional Needs – It Is Well With My Soul’… it is tough to read it now… https://theadditionalneedsblogfather.com/2018/06/21/parenting-a-child-with-additional-needs-it-is-well-with-my-soul/
This was a low point for us all, but even in the middle of that hard time we saw hope for the future, hope through our faith, hope for James. We didn’t give up on him, and he didn’t give up trying… One little step followed another, and then, suddenly and amazingly, in August 2018, James was willing and able to head out of the house again… I wrote this!! ‘These Are A Few Of My Favourite Things – And They Are Back!’
Oh-My-Days!! How amazing it felt to write that… to see James out enjoying life again, exploring his favourite places again, engaging with people again. Today he is regularly out and about, back out in the world and loving it… and so do we! The photo for this blog is James and his mum out at Compton Abbas airfield café again a few days ago (with me taking the ‘photo).
If you had told me a year ago that all of this was possible, would I have believed it? Yes, I think I would; in spite of the evidence to the contrary, in spite of James not having left the house for almost a year, in spite of the team of professionals telling us that James might take years to get back to where he had been, even if he managed it at all.
We had faith… faith in James, faith in each other, faith in God and his plans for James, for us. That faith never gave in, never stopped hoping, never stopped believing. What a difference a year makes, an amazing year, and year of learning, a year of transformation… This year has taught us many things, and teaches us still, but one thing that may be helpful to parents on a similar journey to ours is to evoke the words of Winston Churchill; words that we can certainly empathise with and encourage others to own… “Never give in, never, never, never…” 🙂
May 9, 2019
Photo: © Mark Arnold
(Clare Arnold and James Arnold at Compton Abbas Airfield Cafe – May 2019)
Our Awesome, Amazing, Actually Autistic Boy