Many of you will have read before that I am a mother of five children – all now independent adults, and to the delight of my husband and I, all living in New Zealand. Even more special is that our children are friends as well as siblings and prioritise time to keep in touch. The spouses and partners of our children have seemingly accepted, or at least coped with this family connectedness.
You are probably wondering why I am sharing this. I’m not describing anything unique or remarkable. That’s true, except that our family was and is profoundly affected by having a child who is neuro-diverse. (That is the language of today – he had other labels as he grew up).
He saw the world differently, was not able to regulate emotional responses in the way others can, his brain processed sounds differently and did not register pain at all. Pain, and the fear of pain is vital for helping us avoid danger. All this meant he was difficult and even dangerous in some instances but he was also extremely academically capable. He was loyal and affectionate and I would have walked over hot coals to ensure his safety and wellbeing.
He is my son and I love him to bits.
As a family, we were very fortunate to live in places where there was good access to Cams (Child and Adolescent Mental Health Services). These services offered expertise when as parents we had reached the end – and believe me that happened often. The journey was gruelling and amazingly rewarding. I believe that the closeness of our family is mostly because we all had to work harder at being family and gained so much along the way.
One of the hardest aspects of having a neuro-diverse child was the isolation I felt. It was very difficult to visit friends. Because I couldn’t guess what each day would be like, I could not be part of organisations or events that required a commitment. For years I couldn’t work because even when he was at school, I could be called in at any time.
One of the few safe spaces was our local church. There, we found people willing to listen deeply to us as parents. People who accepted, even loved, our son. Members of the public would often find it necessary to tell us how to sort out our son, but at church we found people willing to listen to the frustrations and pain we lived with, and who supported us with all our quirks. That acceptance flowed from Jesus’ teaching that every person is valuable and has gifts and talents that are to be shared for the benefit of all.
Now we want to offer that support to others. This week, in the Anglican Church hall in Kihikihi (by the cicada on Kihikihi Rd), we will offer an opportunity for parents of neuro-diverse children to gather, share their stories and be listened to as I was. All welcome to Coffee and Cake today from 1pm to 2.30pm.