Kiddo is eight. Eight-and-three-quarters, if you ask him. He’s small for an eight-year old, a bright blonde bundle of frenetic, kinetic energy and sometimes a tangle of frustration and uncontrollable anxiety. He is incredible, gregarious and exhausting, all at the same time. He has always been the same, since we brought him home as a nine-month-old baby.

He was diagnosed with FASD at 5, ADHD at 5 and Autistic Spectrum Disorder at 7. And while these diagnoses are useful in gaining professional understanding of him and getting him support, they are simply background details in daily family life. Things are done a little differently in our house, but we don’t consciously ‘accommodate.’  It’s just the way the day works – a strange mixture of routine and flexibility.

Kiddo wakes bright and early – anywhere between 5.30am and 6.30am. He’s had around six hours of sleep, but sleep deprivation doesn’t seem to make a dent on his enthusiastic hollering. We are usually treated to a mash-up of his favourite songs and lines from TV programmes at deafening volume.  Just as well the elderly lady upstairs is partially deaf. 

His spirit animal in the morning is Tigger. He’s almost entirely ‘bounce’ with no thought of consequences or volume. Bathroom visits need close supervision because water is endlessly fascinating and toilet flushes are apparently best observed by sticking your head in the toilet bowl. Breakfast is either inhaled or spilled, depending on the day. He eats it standing up at the kitchen counter because ‘My brain just wants to be silly with a chair at this time of day.’ 

Teeth are brushed, hair is combed, and we head to the car, him in pyjamas with his school clothes in my backpack, because attempting to dress an overexcited child at home is akin to trying to wrestle an octopus into a binbag.

Kiddo dresses (with my help) in the car in a quiet part of a supermarket car park. He prefers it that way - ‘there’s less for me to mess about with, Mum.’ 

We are the first customers through the door when Costa opens each day and things always follow the same comforting routine – order coffee, go to the toilet (a battle we always had and which was solved by making it a ‘rule’ that we go in Costa before school every day), do homework, check visual timetable for the school day, so that he knows which teacher he has, which PSA and what he’s having for his school lunch. Dress down days and school trips require a fair amount of preparation, a social story and always generate anxiety.

I know that he is well supported in school – he has his safe space, his workstation, his visual timetable and the understanding of staff and pupils. It is lovely to hear now that he speaks to other children, that he has gone from working 1:1 with an adult outside the classroom in P1 to being able to stand the sensory stress that can be in a classroom and to sometimes work with others.

Yet I still know that by 3.15pm, he will be exhausted. He inevitably throws himself on me when he sees me – he has not yet grown up enough for displays of affection to be considered uncool, and to be honest, I hope he never does. 

All he wants is to go home. Teddies, blanket and snacks are the order of the day. If he’s struggling to regulate, I hold with the mantra of just adding water (closely supervised, of course). He can stay in the bath for hours and doesn’t notice when the water is freezing cold.  He’s often too tired for much tea and bedtime is a struggle. He stalls as much as possible.  He may wake up as Tigger but he is Piglet by bedtime – small and full of anxieties.

We use his ‘feelings board’ to talk about his day – he chooses visuals which represent his feelings, and we chat through them, good and bad. He has his sleep medicines, though sleep onset delay lasts hours, and he is often awake through the entire night. He has his growth hormone injection without a murmur, as he has had every night since he was four.

I go back through to check in with him regularly and he will often call for me, asking for deep pressure on his arms (he needs firm touch to help him regulate), an emery board (jagged edges on nails prevent any sleep at all and he will pick them until they bleed), a glass of water or ‘another huge snuggle’. Eventually, he sleeps.

As he grows, these routines, the structures, the talking and wondering out loud, the circling back when things have gone wrong, the rupture and repair cycle – they are beginning to take root. He tries strategies to regulate and can often verbalise what he needs. His resilience and courage are admirable; his capacity to love is unparalleled. 

Ailsa Clarke

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