One of the things about parenting a child or young person with additional needs is that life is never predictable. Just when you think that everything is going along quite well, out of nowhere something will happen that turns everything upside down and breaks it apart again. That this might happen on a fairly regular basis doesn’t necessarily prepare you for the next time, or give you the answers you need. It might, however, make you look ahead at what could be the light at the end of the tunnel and cause you to wonder if instead it’s a train just about to run you over!
Being disrupted is normal for additional-needs parents, it comes with the territory and even if it catches us out the one certainty to add to death and taxes is that it will happen again and again and again!
Over the years, we’ve entered into, gone through, and emerged the other side from many disruptive periods with James, our 16-year-old autistic son, who also has learning disability and epilepsy. Some of these periods have been because of big changes in his routine, such as changes at school. Some of them have been due to big changes in James himself as he has developed and grown. Hitting puberty was a very disruptive time for us all, as has been his more recent diagnosis of epilepsy, which has resulted in some significant anxiety issues for him. Sometimes the causes of the disruptive periods can be less obvious to spot, such as if he is beginning to feel a bit unwell.
As James is mostly non-verbal, it is important that we don’t ignore these disruptions, but try to work with him to understand what he is trying to communicate to us through them. It might just be that as a 16-year-old teenager his hormones are raging, or it might be that his anxiety-based stress is because how he feels when he is generally anxious is similar to how he feels when he is building up to an epileptic seizure, and he finds it hard to distinguish between the two. What matters most is that James feels safe, cared for, and is able to communicate his feelings in a way that we can understand, respond to, and help him with.
While sometimes these disruptive periods can be hard for us as parents, with the recent episodes it’s involved lots of juggling of work responsibilities for example, one thing that this does build in us is resilience.
I remember the first time I saw that on a Social Services form, describing us as a resilient family, and yes, our experiences over the years have built resilience in us. Our lived experiences have also enabled us to be able to help others, especially through the additional-needs ministry work I do through Urban Saints and the Additional Needs Alliance. That doesn’t mean there aren’t times when it’s hard, when we feel like we’ve been run over by that train, or when like this morning I stood by the window looking out over the garden and longing, just once, to know that the day would all go to plan. (Shortly afterwards it all broke apart, but thankfully came back together again by mid-morning! A typical day!)
Just because we’re busily serving God by growing an additional needs ministry doesn’t mean we’ve got it all together and have all the answers. It doesn’t mean that we’re bullet proof. We are as vulnerable and broken as anyone else; in fact our vulnerability can increase because of the work we do, as the enemy prowls around looking to find ways to cause harm to God’s work. But God knows this, and teaches us that it is in our vulnerability and our brokenness that he can use us to serve him and to serve others. It is because we are vulnerable, because we are broken, that what God does in us and through us can have authenticity and integrity. If we felt that we had all the answers but had no lived experience, no scars, no stories of disruption, resilience, vulnerability and brokenness to offer, then we would have very little of real value to give.
Paul writes that “If I could speak all the languages of earth and of angels, but didn't love others, I would only be a noisy gong or a clanging cymbal.” I Corinthians 13:1 (NLT)
I know what he means, as the experiences, scars, disruption, resilience, vulnerability and brokenness I speak of are united in love. Love for James, love for our family, love for those we serve and support, and love for God who is there with us through it all.
I’ve mentioned many times before my favourite worship song, Cornerstone. There are many reasons that it speaks to me, but this part touches me the most, “Christ alone, Cornerstone, weak made strong in the Saviours love. Through the storm, He is Lord, Lord of all.”
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.
Confessions of a Special Needs Parent