the way it is

We all want everything to go well for our kids. And as they grow in the world, you run into preconceived ideas you have as a parent and about your child which are somewhat surprising. We thought our child was pretty easy going and had excellent social skills (far more advanced than either of his parents) so it came as a surprise when he got into trouble at school. He was reacting in ways we’d never seen before and getting physical with other children. That was embarrassing to us as his parents, and troublesome. We tried coaching and discipline and things got better for a while and then suddenly, we were back at square one again. We tried other things, invoking consequences and quickly learned that taking things away only made matters worse. Is he spoilt? Immature? A bully? Well, no at least to the last one, it seems he is reactive and gets in trouble when someone bugs him. How could our lovely child be causing this trouble? We are told that apart from these rare outbursts he is a lovely, caring, funny, and social child. Puzzling.

And the child that we think is so smart, who carries on conversations about the physical characteristics of sharks, or the deck and radar configurations on warships, who learned his letters at 2, has been labelled as likely to have a problem learning to read and so requires extra coaching with letter sounds and syllables. He has trouble copying letters from the blackboard to the paper, has trouble holding a pencil and struggles with his letter sizes. Some letters are tiny and some are huge. Sometimes within the same word.

And then there are our big 2. Eating and sleeping. The boy is a picky eater and in his short life, I’ve had many conversations about what he eats or doesn’t eat with many people and been given the same advice over and over. He’ll eat if he gets hungry enough. Have him cook and grow things and then he’ll eat them. You have to offer a food 20 times sometimes before a child will eat it. So we tried. He won’t eat even if he’s hungry, if he doesn’t like what is on his plate. We tried this and all of us ended up in tears. We regularly cook and bake together and he only eats what he likes. We grow vegetables in our garden and he only eats what he likes. He goes to the market with me weekly in the summer and knows all the vendors and they give him things to eat all the time and he only eats what he likes. He won’t try things unless they have chocolate in them or on them. He doesn’t like hot food – temperature and spice. Everything is too spicy except for what he likes. Some things like rice and pancakes make him gag. But he is healthy (seemingly) and active. And no he doesn’t eat pizza or spaghetti or mac and cheese or hamburgers or chicken nuggets. He does eat French fries but only if they are colder than lukewarm and not too crispy or brown. I’m at a loss. I read this book and it became my bible but it didn’t help except that the dinner table became a calmer place. And I know if the boy doesn’t eat, it affects his behaviour at school. But we work along, trying to get our boy to eat, thinking that he will grow out of it. Suddenly I noticed him chewing on his clothes and his Lego tires. This isn’t right I think. I made an appointment with our doctor and then he starts biting foam blocks at school and foam out of the chair I’m recovering. Our doctor thought he may be deficient in some essential nutrient – iron possibly as he doesn’t eat meat beyond the occasional bite of all beef hot dog. Our doctor booked us in with a specialist, a paediatrician who specializes in childhood eating. And after a 2 minute conversation with our boy and me he changes our world.

“Of course this boy has trouble with eating”, he says to me. “Let me show you why.” And he shows me something no-one has noticed before. Our boy’s tongue doesn’t move up. If you ask him to touch his tongue to his nose, he can’t; his tongue sticks straight out but not up. His palate is very elevated so his mouth is like a cave and with his tongue, he can’t chase food around his mouth. So rice is a nightmare for him to eat. Then the doctor says “your boy doesn’t experience food the same way most people do. He decides what is ok for him to eat based on past experience, visually, so if it doesn’t look like something he can eat safely, he won’t touch it”. He writes down for me, sensory regulatory disorder.

And suggests we try food based on sight, texture. “If he’s chewing Lego tires and foam, try foods with those textures.”

With my mind reeling, we go home after stopping at the bookstore to buy a treat for the boy. He chooses a book on the Titanic. I buy him a book called “Just go to Bed” which has quickly become a favourite. And after swimming, I Google sensory regulatory disorder. I know I have to filter what I read as not all of it may be real or factual but what I find is astonishing. I feel like I’ve been given the key to my child. Sensory processing disorder or sensory integration disorder websites come up, with case studies of children whose behaviour is eerily similar to some situations we have. I go through a checklist, some things, no issues, others, lots. My husband, the family sceptic, reads some of the material and comes into our bedroom, stunned. I start to cry. I can’t help thinking of all the times we’ve been mad at our boy, when we’ve thought he was being disobedient, not listening, careless, and wilful and much of it has been down to the way he is wired. My husband says, “We can’t change what has happened, we didn’t know. Now we know.” I go down the hall, to where our boy is sleeping. I stroke his hair and whisper that we love him. I tell him we are so sorry, we didn’t know.

In the weeks since that night, I’ve been in a fog. Wanting more information, treatment options, wondering how we fix this. We don’t fix it. We learn to live with and cope with it and learn to help our boy cope with it. First things first. A blood test reveals that our boy has a zinc deficiency so for 6 weeks we are to give him zinc supplements and see what happens with eating as a result and then go back to the paediatrician. From there we will develop a food plan to widen the variety of food our boy will eat, to help desensitize his palate. For the rest, I have a list of names of OT’s in our area who deal with this issue. Our boy needs to be evaluated and assessed and then we decide a course of action. In the meantime, I take mental notes of the situations where our boy gets overwhelmed and over stimulated. I still don’t know really how to help him with this, but recognizing it and helping him recognize it is surely a start.

What have I learned so far? That our boy has adapted quickly. When we were out at a birthday party the other day and he was offered pizza, he told me to tell them about his “special mouth”. No to pizza, yes to cake, yes to apple juice. The other day he had a meltdown during a scavenger (scabenger) hunt, the second time at a birthday party that this has been an issue. Both times we were outside. So I asked him what was hard for him. He said the outside is too big to look in for one thing. So next time, I need to help him break it down, and encourage him and hopefully it will be better. We’ve had some wobblies, as our boy realizes that he doesn’t process things the way his friends do, that he feels differently inside than most people do. He described it to me the other day as buzzing inside all the time. I can’t even imagine what that must be like. But not everything is due to the sensory thing – some of his issues are because he’s 6, because he’s spoilt and sometimes he’s a bit annoying. That’s ok too.

So we are starting a new journey, together. Me, my lovely man and our boy with the “special” mouth.