Additional Needs Parenting: Unpredictable, Impactful, Inspirational

Most of you know that James, our 18-year-old autistic son, has had times when it has been hard for him to leave the house, with all the disruption that causes around school, work, socialising etc. Things are better now than they were, but still remain quite unpredictable with the occasional hard day; however the journey, while impactful, continues to be deeply inspiring!

James not going into school means that one of us needs to stay at home with him as he is unsafe to be left alone. Juggling work and home commitments is proving challenging for us all during this pandemic, as we find ourselves living out the old Chinese proverb quoted by President John F. Kennedy over 50 years ago; “May you live in interesting times”! (never thought I’d be quoting Kennedy in a blog!), but it is exacerbated by the unpredictability of James’ anxiety.

So where does all of this unpredictability leave us? How is it impacting us and in what ways are we responding to this positively? Well, here’s how!

We continue to learn, as we have learned all through James’ 18 years of life so far, that impact and inspiration are two sides of the same coin. Friedrich Nietzsche was right when he said “That which does not kill us, makes us stronger” (never thought I’d be quoting Nietzsche in a blog either!), but I would add that in the case of additional needs parenting it makes us better parents too. Even at the end of a torrid day, a day where things have all fallen apart, all the plans we made for it lie in tatters, and we’ve just about done with apologising to everyone, it is still possible to count our blessings. Nobody died and we’re all in one piece – that might in itself be an achievement worth celebrating some days!

A while ago I read ‘One Thousand Gifts’ by Ann Voskamp, where she shares how she has found joy each day in the midst of so much that is difficult; to chronicle these gifts, simply writing two or three down a day in a book.  She uses an ancient Greek word, eucharisteo, meaning to be grateful, to feel thankful, to give thanks… even in the storms of life.

I went on my own journey of chronicling one thousand gifts, three a day for a year; as I look back over some of what I have written over those difficult days, weeks and months, I can see joy in the midst of so much that had been difficult… “Time spent doing jigsaw puzzles with James”, “Learning patience as I help James to cope with his day, and enjoying the sound of his laughter!”, “An easy transition to bed”…. and so on…

Through the impactful disruption of those difficult times, and the difficult times we still experience, there have been inspirational moments that have brought joy to us all, and that have taught us much about ourselves. James still has his struggles, but we are learning patience, deepening even further in our compassion and love, seeing into his world ever more clearly, and helping him to trust us even more.  Realising that if our day gets turned upside down, it’s not the end of the world and there is still much to celebrate… “…enjoying the sound of his laughter!”

We do not journey alone, but with family and friends whose love and presence supports us; maybe you also have a faith, I know mine has sustained me through many storms… We journey through the unpredictability, impact, and yes the inspiration, never alone but always with those who care for us; with them joining us at the helm, helping us to navigate the way, or maybe just keeping the engine going!

So if, like us, you have been or are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, seek out the inspiration, seek out the things to give thanks for… eucharisteo… and find joy, peace, inspiration and a drawing closer both to your child and to those who care for you, through them.

Mark

Content and images © Mark Arnold

See also:

Additional Needs Parenting Is Like Being A Circus Performer
https://thedadsfirecircle.com/2020/08/16/circus/

Published by The Additional Needs Blogfather

Mark Arnold (The Additional Needs Blogfather) is the Additional Needs Ministry Director for Urban Saints, co-founder of the ‘Additional Needs Alliance’, a ‘Churches for All’ partner, a member of the ‘Council for Disabled Children’, the ‘European Disability Network’ and the ‘Living Fully Network’, serves on the executive for ‘Children Matter!’ and writes a monthly additional needs column for Premier Youth and Children’s Work (YCW) magazine as well as being a writer for Firefly Community, DAD.info and Key Ministry among others. Mark is dad to James, a 17-year-old Autistic boy with Epilepsy and Learning Disability, and to Phoebe, an 19-year-old history student at Winchester University.

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