Unsensible Senses
We put ice cubes in his tea (too hot), he only eats empty cones with no ice-cream (too cold) and he hates my cardigan with the textured polka dots. This is what mothering a child with complex sensory issues looks like. Clothing labels must be removed, cutting nails is a distressing and time intensive exercise, and there is a very specific hair-washing system developed by our creative and loving nanny (we’ll call her B). As part of our Jewish culture, we did not cut N’s hair until his third birthday. This resulted in the most magnificent wavy locks down to his bum. While I loved his beautiful hair, I deferred all hair maintenance to B. Only she could wash it without it sounding like we were gouging his eyes out with a toothpick. Only she could brush it and tie it up in a neat little ‘man bun’ with no fuss and tears. Although haircuts are now a regular and relatively problem-free outing to the salon, N will not have his hair washed at the basin. Apparently, I still don’t know how to “do it like B does it!” but thank goodness N’s hair is now short enough that the wash takes a matter of seconds.
Swimming lessons are another challenge. N point blank refuses to put his face in the water. He will get in the pool and will even wear arm bands (after a lot of initial resistance), but his face is off limits. Persistence on this front by the swimming teacher resulted in more than one lesson having to be cut short due to N becoming inconsolable and refusing to get back into the pool. So, we tried something on land – soccer – I don’t even know what to say about this. It takes place outdoors, there are only a handful of kids, and the parents hang around at the lesson. As far as I can tell, it is not a sensory overwhelming / overstimulating scenario. Yet, the lessons were usually a total shamble unless N was the only child at the class. Funny enough, the one activity with which we never had any issues was Clamber Club. He absolutely loved it from the age of 4 months up to this day, progressing through the baby programme to the toddler programme and then the sports programme at school. Perhaps this is because Clamber Club is developed by an occupational therapist and thus the input and activities are all carefully constructed and moderated.
Social outings and activities have to be extremely carefully planned and often we have learnt through trial, error, disaster and subsequent adaptation. The Christmas Lights at Melrose Arch are an example of this. In the December of 2018 we decided to go with another family to look at the lights and to have an early supper. Such a lovely idea in theory and such an unmitigated disaster in reality. Long story short, we had to pack up our food (N’s totally untouched) and get a screaming, thrashing toddler to the car. It took well over an hour to calm him down when we got home. It had just been too much for his sensory system to cope with and he landed up in a totally dysregulated state as a result. The following year, N had been at the language unit for a year and had made such huge strides in speech therapy and occupational therapy that we decided we could try again. This was a severe error in judgement on my part, as I truly believed he had progressed enough to cope with the range and extent of sensory input that is Melrose Arch on a Saturday evening in December. Once again, we had to pack up our dinner and get a screaming, thrashing child to the car. Once again, it took over an hour to calm this child who was so distressed that he just lay on the floor of his room weeping. Lesson learnt. This type of outing is not fun for a child who has sensory issues and struggles to self-regulate. It is an assault on his sensory system that pushes him past the point of no return.
Another such scenario was the live Peppa Pig show. N loves Peppa Pig, so I booked us tickets together with a few other moms and their kids of the same age. He was so excited and asked me about it every day for weeks leading up to the event. Once again, I do feel like it was an error in judgement on my part in terms of over-estimating N’s progress and tolerance level within the sensory realm. There were bright lights and colours, large dressed up characters who needed to project loud voices over a crowded theatre, background songs and even balls being thrown and bubbles being blown into the audience at one point. And that was just the show itself, not accounting for the noise level of the audience, the children jumping around excitedly and various snacks being sold and passed around. We left at the interval and I was surprised we made it that far.
Eating out has never been simple, but it is something that we managed to integrate into our routine more successfully than some other outings. Pre-COVID we had a set pool of restaurants that we rotated, where we knew that it wouldn’t be too loud or too full; that they would make the exact meal he requested (the same every time); and where we knew the distractions were limited enough to ensure he would sit with us and eat his food. The best example of this is our neighbourhood café which is walking distance from home and where the waiters and staff have known N since he was born. They see him coming and 2 minutes later his baby-cino is served. They know which tables work for us; how N likes his eggs and that his attention span and window for waiting patiently are short. They don’t mind if there are crumbs on the floor or if he wanders around the restaurant. Their willingness to accommodate him takes a lot of stress off us and we can all enjoy our meals.
I can’t control N’s sensory system, but I can control the environments in which we place him so as to manage the challenges he has with this system and thereby lower the risk of overstimulation and total dysregulation.