I loathe self-pity, probably because I can fall into that particular pit with alarming ease. With Leo’s new diagnosis it has become more of a danger than usual, and I have been reminding myself that There is always someone worse off. I only have to watch the news occasionally to see that this is true. For an hour, or a morning it might even help me feel lucky, to be grateful, and to deal with whatever I am facing with more of a sense of proportion. This rarely lasts more than a day, and maybe that is a good thing. I don’t really want to get the energy to deal with my own issues, by feeding on the difficulties of others. It is more than a little distasteful to turn someone else’s sorrow into a kind of self-help tool for yourself. Perhaps these days I am aware that my family could even be used in that way ourselves.
Occasionally however, it is helpful to be reminded that yes, things could be worse. As far as I was concerned, Leo’s test results were all in; he had had blood tests, and urine tests and all had come back normal. Then a letter arrived announcing that the urine test for mucopolysaccharides had been returned as normal. This was the test I wish I hadn’t googled. A cruel metabolic disorder with no redeeming features. If I had known that test was not yet in I would have been jumping on the anxiety train on a daily basis. I was flooded with a huge sense of relief, but it also took me a bit closer to an acceptance of what is. A bit of Leo’s chromosome is missing. Nothing can be done about that, it is a fixed fact and it can’t be fixed. I can’t fight it, he can’t fight it. How it affects him is as yet unknown, but certainly he has speech delay and autism, and both are high on the list of associated problems. Unlike autism I still can’t embrace 16p11.2; my attempts to reframe it positively have fallen flat. However, I can work on accepting it. It feels like harder work, but for Leo’s sake I have to do it.
The day after the test results letter, I tore open another letter form the Child Development Centre. These days, when I see parent or guardian of…. on the envelope my heart steps up a gear. I even thought I could see a red stripe on the letter, as if they would alert me to bad news in this way. In fact it was simply another appointment to see the dietician.
Appointments can be annoying. You often feel you are just giving the professionals the same information over and over to no purpose. They will often then send you a letter detailing (with varying degrees of accuacy) all the things you told them at the appointment, finishing with the reassurance that they will review your child in x month’s time.
The dietician however, was cool. We needed to see her because of Leo’s extreme pickiness. I was surprised to learn this could be related to autism and I wanted someone to tell me it wasn’t my fault. It sometimes seems as if parents take full responsibility for their child’s food intake, despite the fact that you cannot force somebody to eat something if they do not want to do so. Nevertheless, I was deeply ashamed of Leo’s food diary, which went something like this:
toast and jam, dry cheerios, peanut butter sandwich, apple (hooray!) yogurt, dry cheerios, yogurt, peanut butter and rice cake, yogurt, boiled egg and toast, yogurt, banana (hooray!), chocolate cake, dry cheerios. Vitamins. And so on. It is bizarre that I feel like a good parent when my son eats an apple.
I scattered references to the things he had been offered and refused over the three days: a very small portion of roast chicken and potato, a carrot, some grapes, a raspberry, a cheese sandwich. He doesn’t just refuse to eat these foods, he refuses to look at them. The more we say they are yummy and eat our own portions enthusiastically, the more determined he becomes. I can imagine it is most annoying, so I can’t say I blame him. Every mealtime I have the choice of giving him something he will eat, or throwing food in the bin. It feels a bit better to follow the advice to put a bit of the food we are eating on a little side plate for him to explore. The only problem is, he doesn’t explore it, not even with his eyes.
The dietician said that this is a very very typical diet for an autistic child, and in fact it is not that bad. I wanted to hug her. She went on to explain a picky child will eventually eat if there are no other options. Most of the time an autistic child would prefer to starve themselves. She explained it like this. For Leo there are two categories: food and not food. We all have these categories, but for Leo, the ‘not food’ category is rather bigger. So when we offer him roast beef, or rice pudding, or peas, or pears, or porridge we may as well be offering him the cushions, the table and the chairs to eat.
In theory a plate of slugs could be a source of food for us. However, most of us could not eat ‘just one’ even if others were eating them. The ‘damp’ foods like meat stews and vegetables we offer him may well be causing a similar reaction in him. She advised us to keep serving him what he likes, to not make an issue of it and just to push gently at the edges sometimes. He likes crunchy food so try crackers. Get him used to variety by cutting his toast in squares one day, triangles the next (I already do this, hooray for me). See if he will touch a runner bean then eventually lick it. Maybe one day he may eat some of it. What I loved the most was that she helped me to see things from Leo’s point of view. I had fallen into the trap of seeing it as a problem for me, and was too focused on my own feelings about it to even realize it is not about me. Again.
The issue of diet has become even more relevant following the 16p11.2 diagnosis. Apparently around half of people with the microdeletion are overweight or obese. Leo is not, but he definitely has the chubbiness my other kids had before they started school. Pre-16p I was not the slightest bit concerned. Now I am engaging in slightly deranged thinking: he had four slices of toast this morning, is that too much? I am only too aware that monitoring his food intake could well be counterproductive, and I need to find another way. Luckily I know a great dietician. In fact, I need to find another way to deal with all the 16p issues. I could end up seeing everything through the prism of either autism or 16p. The ideal is to hold those things in awareness, whilst seeing things through his eyes. And even as I write it, that suddenly seems perfectly, wonderfully possible.