Most married couples with children will admit that their most frequent, even favourite topic of conversation is their children. On the face of it, Clare and I are very typical in this regard. However, there is one major difference. We spend the vast majority of our time talking about Arun. Poor Meri barely gets a look in. It isn’t because we love Meri any less, it’s because Arun’s problems are more immediate, severe and difficult to fathom.
If we look at just one aspect of Arun’s life, the everyday task of eating, it illustrates the complexity of the challenges facing him. Arun will not feed himself and will only eat pureed food. We need to spoon feed him and usually he requires some sort of distraction whilst eating. So mealtimes are often a fraught affair with pureed food, a protesting child and TV, music and toys strewn around.
But why is it so difficult?
Is it because of his problems with movement caused by Cerebral Palsy? Arun’s fine motor skills are not great and he has difficulty holding objects, such as spoons with the required precision to load them with food and then to transfer them safely to his mouth but he will do this if in the right mood. Arun cannot chew food yet and we are told that the action of chewing is linked to the action of trunk rotation which Arun rarely does, again because of problems with gross motor skills linked to his brain damage.
Or is it that he is missing certain normal reflexes because of his cerebral palsy? Clare had to teach Arun to suckle (he didn’t know how to do this instinctively like normal children).Perhaps he has a problems with swallowing food, another common cerebral palsy trait, which means he prefers pureed food.
Or is it because of his tactile defensiveness caused by autism? Put simply this means that the individual finds certain everyday sensations troubling and will recoil from them. Arun has always found anything touching his mouth very upsetting and has never mouthed objects in the way that neuro-typical children do.
Or does he have the common autistic desire for sameness and routine? Is this what is stopping him moving on from the familiar pureed meals?
Or is it because he has many bad associations with food? Arun suffers from reflux which means that he associates food with acid irritation and vomiting. Is he simply wary about mealtimes because he associates them with pain and discomfort?
Or is it a perfectly normal reaction to being ventilated for the first six months of his life? Arun’s first experiences with anything around his mouth was a horrible plastic tube being forced down there and oxygen being pumped in and out. The tubing stopped him using his mouth for anything else and constantly scratched and irritated his throat. If I had a similar experience I wouldn’t want anything near my mouth as well.
Does he need to be distracted whilst eating to make him forget about all these things? Or is it simply that he likes Jeff Buckley, the Foo Fighters and Snow Patrol and has figured out that his parents will play these tunes for him when he’s eating?
I spend hours thinking about this stuff and analysing the experiences and data that we have compiled. Every healthcare professional ranging from Occupational Therapists, Speech and Language Therapists, Physiotherapists to Paediatricians have their own take. All I know is that every single one of these factors plays its part and as Arun grows and changes so does the mix and emphasis of factors.
So, you can see we have a lot to talk about and this ignores what is going on with other areas of Arun’s life. I could outline similar lists for his walking, his language development, his social interactions and so on. We spend our lives constantly assessing, weighing up and measuring the different causes and effects that Arun’s different conditions have on him.
But the main thing we have learnt is that we aren’t interested in treating or curing Arun’s cerebral palsy, his autism or even his love of the Foo Fighters. We try to look beyond the labels and simply help the gorgeous little four year old we love.