Pottering in Potterspury

“Isn’t it fantastic that Josh has started walking”

Such a declaration would normally provide opportunity for proud parents to recount the exact date and time their child first walked; details of the setting, those present and how it all happened would be enthusiastically shared. We, however, were puzzled.

To the best of our knowledge, Joshua wasn’t walking. The weak muscle tone in his legs meant that, at almost two years old, he could only crawl. We had never been given a guarantee that he would walk and physiotherapy exercises did not seem to be progressing this area of development. At most, they provided Joshua with endless opportunities for games, giggles and mischief.

The nursery owner noted our confusion and was puzzled herself by our unenthusiastic response. We explained ourselves and gently suggested that she may have got it wrong. Emphatically, she declared that not only was Joshua walking, he had been “for a few days”. The keen interest she took in each of her charges made it difficult not to believe her.

Once home, we encouraged Joshua to show us his newly discovered skill. Bemused by our enthusiasm, he crawled over to a more achievable activity. Refusing defeat, we suggested an after-dinner stroll in the garden. Keen to accompany us, he was perplexed when we lowered him to the ground feet first. He sat down, looked up at us and proceeded to eat some grass. Shady attempts at bribery were also dismissed by our seated son. A treat for a toddle? He reached for the treat from a sitting position.

Arriving at the nursery the next morning, we recounted our experience. The staff told us to return after lunch when we would be guaranteed a sighting of his toddling. All we had to do was peep over the garden wall and hope that no one reported us to the police.

Arriving at the rendezvous, we parked our car around a corner and crept to the pre-arranged observation point. Holes in the brickwork meant we could watch the playing children. As we scanned the garden, we noticed a beautiful blond-haired boy. Steady on his feet, he was laughing as he chased the other children and joined in with their games. Oblivious to our presence, Joshua, aged 23 months, was walking.

Neither of us spoke as we watched him; the moment was too meaningful to be filled with words. Eventually, Andy called his name. Josh, uncertain where his dad’s voice had come from, dropped to his knees and crawled. It took almost a week of encouragement before he would admit to us that he could now walk.

An incredibly important milestone had been achieved; one which we had been working towards for many months. Though I was pleased and relieved, I found his behaviour unsettling. It tapped into questions I had about my proficiency as a mother. Why would he do such an important thing for others and yet not for me? Was I not what he needed? Did he prefer others to me? How important was I to him?

Over the years, as I have sought to understand my son, I have been reassured to discover that I am not the cause of his inconsistencies. Joshua compartmentalises his behaviour; abilities or emotions will be expressed in some settings but not in others. At home he would raid the fridge; at respite he would not. At school he would use the toilet; at home he would not. At home, he didn’t sleep and refused to remain in his bedroom; at respite he would stay in his bed all night long

At times this was galling and frustrating. But I have come to recognise that this is one way that Joshua expresses himself. I may not fully understand his rationale, but he is as he is. Once Joshua decides what his ‘normal’ is in one setting it is unlikely that it will change. Conversely, when he refuses to repeat this normal in a different setting, it is unlikely that this will change.

His actions reflect what we all do; they are just more polarised. A child who can behave perfectly in school may do the exact opposite at home. An adult may express views and behaviours in a crowd that would surprise and shock those who know them privately. We can all vary our behaviour depending on where we are or who we are with. With Joshy, however, there is no subtlety. He, for his own reasons, decides what he will and will not do. He has no compulsion to hide his actions and does not consider the consequences.

Andy and I laugh when we see him adapt his behaviour depending on who appears in his world. Our arrival can elicit jealousy in him; a staff member may suddenly receive a slap if they try to engage with us whilst we are with him. This is behaviour they otherwise do not see. It causes amusement amongst his support staff and a hint of embarrassment upon his face. But, despite being caught out, he largely continues to persist in doing things his own way.

And rightly so. This is one area in Joshua’s life where he gets to choose. In his largely dependent world, Josh maintains independence where he can. He has the right to express himself in this way.

Nowadays, I like the predictability of his unpredictable behaviour. It is another endearing characteristic of my differently able and extremely stubborn son.

The Laughing Policeman

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Author: Fran

I am the wife of Andy and mother of 3 boys. I am also a Christian. My eldest son was born with Angelman Sydrome and I was his main carer for 18 years. After a lot of encouragement, I have created this blog to tell our story; the ups, the downs, the mad, the bad and the downright ugly. Honest recollections of times lived and insight into life as the parent of a differently able child.

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