As you may have noticed we unintentionally took a break from the blog. Since starting this blog we really wanted to put out quality posts that reflect our lives and the issues we deal with relating to Jonah and Autism. More often than not we would have posts ready in our heads, but not enough time or energy to feel confident that what we posted would be of the quality that we wanted. I think our biggest problem was we put too high of standards on ourselves. So here’s to a refreshed start with better expectations!
Jonah hasn’t eaten real food in over a year now. He has lived off of milk mixed with carnation & yogurt and V8 Fusion. Surprisingly he is very healthy and has amazing energy levels. We’ve discussed our concerns several times with his doctor and while the situation is not ideal she says he is perfectly healthy and his growth over the last year is perfect.
We’ve tried everything we could think of. Before we knew for a fact he had Autism we tried the “starve him out” approach. We offered him tons of food, but not the two things he eats everyday. He refused everything for the first day and when he woke up the second day he had no energy or motivation to do anything, but still refused all foods offered to him. That day we spent the first half of the day just laying in bed which is far from normal as he normally is too energetic to sit still like that. Obviously this plan wasn’t going to work. So after a day and a half we gave up.
Shortly after we had it confirmed that Jonah has Autism we got into an in-home ABA program that gave him 30 hours a week of therapy. Within this program his staff went through various feeding intervention that the ABA program allowed (evidence based programs). We would have short intervals of success followed by hitting a huge wall that we couldn’t ever get over.
Finally we exhausted all our evidence based interventions except one, escape extinction, but no one was qualified to administer this intervention. Well luck was on our side when we discovered that the University of Arkansas had just hired someone who was qualified to administer this intervention. Not only is she qualified, but she also has a 100% success rate out of 30 interventions. Long story short we were able to get her on board to help us.
So that’s where we are now. The new therapy started Dec 4th and is so far going very well. I’m sure I’m going to over simplify it, but basically we start when Jonah wakes up at 6:30am and he has to sit down at the table and is presented with one bite of food (Banana). He is not allowed to get up or do anything until he eats that one bite. The first target is for him to eat a bit within 30 seconds of being offered to him. The first day took Jonah 2 hours and 3 minutes to eat that one bite. However, the next day he took 6 seconds, and on the third day he only took 5 seconds!
So today we started the next goal which is two bites in 30 seconds of being offered. We weren’t too sure how he would do on it, but he did an amazing job at 22 seconds!
Obviously I hope this progress continues, but past experience says we will hit a wall at some point. So I’m anxious to see if that happens and how well we can get through it.
We’ll do a daily update on our Facebook page about his feeding times, but I will try to do a post every Saturday summing the week up also.