Wee Man doesn’t eat well. Never has done. And I would take an educated guess that he probably never will.
When he was born, he didn’t have the sucking reflex needed to breastfeed efficiently. He did sort of get the hang of it but, at around 24 hours old, the gastro-oesophageal reflux kicked in. From that day forward, our troubled little baby would associate feeding with pain. His back would arch and he’d scream in agony; he was hungry but he was in pain, so he couldn’t feed. We finally got the reflux under control when he was 14 weeks old, but by then the damage was done – he then associated the breast with pain and would scratch and writhe to get away from it. Pretty tough for a new Mum to take, but I kinda knew it wasn’t about me…kinda.
Nowadays, our repertoire of foods that Wee Man will actually eat is very limited…and becoming more so recently. My ‘old faithful’ the sausage is no longer an option – no idea what happened, but after eating very little BUT peeled sausages and ketchup for over a year, he now won’t touch them. We appear to be in a food vacuum zone yet again…so, when I hear that almighty but desperate screech, “I’m starving, I want summit to EAT”, I’m sent into a panicking flat spin. Because by the time he actually realises what he’s feeling is hunger, and is able to vocalise it, he will indeed be starving hungry. And very, very grumpy; Wee Man can go from happily playing and being a delight, to being a starving, aggressive devil-child in 0.06 seconds – flat! So, it’s up to me to feed him. But what do I give him??
Like a lot of issues associated with autism, Wee Man’s ability to eat is closely linked to his anxiety levels. He can’t be referred to as a ‘fussy’ or ‘faddy’ eater. His relationship with eating goes beyond choice or not liking a certain food. The anxiety and fear that comes over him when he’s presented with a new food is just heartbreaking to see; it’s like he’s had a plate of poison placed in front of him, and he is so starving that he desperately wants to eat it…but he can’t – something inside him makes it impossible for him to move that piece of food to his mouth. Wee Man’s school have been brilliant with helping him become more comfortable around food, but even they report that when a new food is presented, he has to hold an adults hand before he can go near it.
Eating is also a hugely sensory experience. Wee Man has Sensory Processing Disorder which means he doesn’t feel things in the same way that we might. The smells, tastes, textures, temperature, colours and even sounds of foods and eating is completely different for him. How exactly, I will probably never know, but I just know it’s different for him. For years, I’ve tried to identify what tastes and textures it is that he prefers, but he’s so mercurial with his eating, my list is never static or complete.
Another factor that comes in to play with Wee Man’s eating is control. There are many, many things in his life that he can’t control (not for lack of trying) but he absolutely CAN control what goes into his mouth and what is swallowed. It’s a basic human function that cannot be controlled by another person. Wee Man’s PDA (Pathological Demand Avoidance) makes it impossible for him to take on demands, and feeding has to be one of the earliest demands we place on our children. Hell, you’re not allowed to leave the hospital until baby is feeding properly right?
We’ve had to completely chill out when it comes to food and mealtimes at home. There’s no pressure, no demands to use the correct cutlery, or sit still at the table. No, “you have to eat all your dinner or there’ll be no treats”. I’ll be honest, it drives me nuts, but if Wee Man eats something when he’s wandering around the kitchen stark naked, then I don’t care – he ATE something! We also let Wee Man eat when he’s hungry, rather than trying to make him wait until ‘mealtimes’…by then he’ll either be past it and tearing down the house or he just won’t eat. Nutritionally we have to look at what he eats over the space of a week, rather than trying to cram in five (or is it seven now?!) portions of fruit or veg, meat, carbs, blah blah blah, into one day. That just ain’t ever gonna happen!
What is proving difficult is trying to instil good eating habits in Button and Little Pink. Button isn’t particularly easy to feed, and I think a lot of that is because he so adores his big brother and copies a lot of what he does. He’s also had his own gastro problems which I’ll cover another time. So far, Little Pink tries, and enjoys everything I give her – long may that continue.
Feeding a hard to feed child is such an emotive thing. As a parent it’s tiring, frustrating, worrying and downright depressing at times. One of the key roles in my job description as a Mum is to make sure my children are fed well, so they can grow and learn and develop – how can I do this if my child can’t eat?
But it’s not me that suffers – it’s Wee Man. When you don’t eat, you get hungry. When you get hungry, you get grumpy; some people more than others. In my family it tends to be the males who suffer most from the grumpy hunger rage. Well, guess what? Wee Man is a male. And he’s in my family. And he’s hungry, I would estimate, pretty much ALL the time. Not hard to see why he’s grumpy a lot of the time too…