I never update this blog. I don’t think it’s writer’s block because I generally have too much to say otherwise, but I think this blog thing is supposed to have some sort of organization and that’s what I am, uh, lacking. Oh well.
On today’s menu: the menu. What do you do for a kid who is now 10 years old and whose eating issues are actually worse now than when he was 2? A kid who cannot be in the same air space as a cracker without screaming? Is it too late for him to change? He used to eat sushi for crying out loud. Now he eats about 10 things, and half of them are variations on the same thing. And worse–the fear of certain foods overwhelms him. He can’t just not eat the things he doesn’t like, he can barely be in the same room. He often isn’t.
I wish we had been able to get actual therapy, any kind of therapy, for him when he was little and more malleable. A diagnosis. I feel like we missed our window and he’ll never eat like a normal human being, never be able to sit at a restaurant with friends who are eating GROSS SCARY FOODS. Or be able to go out to eat with his own family again. It was never actually enjoyable, but at least he made it in the door. Now he waits just outside the door (hyperventilating) or in the car while we rush in for takeout. I feel like the doors between him and non-disordered, regular human being style eating are slamming shut every day.
His sister has to cover her plate when he is nearby, and we often have to pull a screen across the table so he can’t see her eating or he screams and runs off. He eats alone most of the time. There are certain foods he will allow her to eat in the living room but only in a certain zone on the rug that is marked in his mind and no one else’s. I admit that I’m not always (or often) very patient with him. It has been a long 10 years of fixing the same thing in the same way night after night after night after night and coaxing him down from the “it has a speck of BLACK STUFF on it” cliff.
I know it’s complicated–there are sensory issues involved, phobias & OCD involved, autism-related inflexibility involved. But is it really too late? Is there any way OT could still help, or any other kind of therapy? I’m feeling pretty hopeless at this point. I’m not sure I have the stamina to pick this hill to die on, either. But what are the consequences if I don’t? He’ll never live a normal social life if he can’t stand to see people eating most of the foods that most people eat. He’s grown a lot in a lot of different ways and we have seen a lot of progress, but the food stuff has actually gotten worse over the years. His sister deserves to grow up in a house where she doesn’t live in constant fear that she’ll be screamed at for what she’s eating.
I go back two years on this blog and see how hopeful I was that Cognitive Behavioral Therapy would help. It did for a short while and then we had a setback and then a crash. And any mention of that therapy does not go over well at all. What is next? We have a new OT next week, but the last time we tried to address feeding with OT it went nowhere. We live in a small state and services are a little hard to come by. The nearest big children’s hospital is 2 hours away, and the bigger major one is 4 hours away. Not a day trip. Not a weekly trip at all. He would also have to EAT OUT OF THE HOUSE during those trips. That won’t go over well at all either. Our outings have to be “between meals.” Eating away from home, even a snack, is a major production. He has routines in place at school that make it possible for him to eat some there, but his choices there are even more limited (bread, bread, tortilla chips, dried mangos, more bread, sometimes spinach leaves, basically.) I’m really out of ideas, time, and patience. It has really been a hard 10 years of feeding that kid. And yet, when he asks me so sweetly to make pancakes (dinner option #1 of 2), because my pancakes are the BEST EVER (how he would know, I have no idea), I still have a hard time saying no.
Any suggestions, please send care of @drowninginpasta. Thanks for reading.