These kids work so hard. This program is called “intensive” for a reason. Robbie has been a little warrior. With too little sleep he sits in the car for an hour every single morning with little push-back and rarely complaining. We get to the hospital where he is immediately triaged and then goes into his treatment room for breakfast (which he refers to as his office). It’s impossible to understand the complexity of the process without seeing it. The behavioral aspects of the treatment are NO JOKE. It is completely data-based and so every single second of his meal is accounted for and recorded. Two data collectors sit in on every meal in addition to the therapist who is feeding. If Robbie pushes a cup away, it is recorded, pauses a second longer than the standard allotted time given for a bite, it is recorded, if he coughs, it is recorded etc, etc. All of this information is then compiled, graphed, and reviewed to determine how to tweak his treatment. Like I said, it’s no joke.
He then goes to the playroom where he works on the same skills he would be working on were he in school. During this time he goes to speech therapy as well as occupational therapy and then it’s time for lunch. We have a block set aside for napping (on a mat on the floor in one of the treatment rooms), more therapy, and then it’s mealtime again. He then gets in the car, to sit again for anywhere from 60-90 minutes, arrives home, plays with little brother for 30 minutes, has yet another meal and then goes to bed. He’s done this for seven weeks now. Every day. Tantrums and all, I am blown away by my little three-year-old boy who gets up each day, and gets to work. He has had the same persistence in those big blue eyes that he has had from the beginning. The same eyes that peered back at me when he was 4 days old being rolled into surgery, Mom, I’ve got to get to work.
They’ve been focusing largely on texture and incorporating chewing into his meals. This is extraordinarily difficult for him. It takes all of his focus, physically and mentally to swallow a small piece of food. But he wants it desperately. He has contacted that there is something different about his relationship with food as compared to his brother, his little friends at school, his cousins. Robbie isn’t one to be left out of anything and so he gives it all he’s got. He told his therapist last week, he wanted to “just eat a cheese stick, but I’m not very good at eating yet.”
So we have one week left. He has come so far and it will still be a long road once we leave. His schedule and protocol for meal times are rigid. Repeated exposure and practice will aid him in enhancing the skills that he has learned here. The impending discharge is daunting but he is so tired. We all are. If we left today I would be comfortable saying that this program met and exceeded our expectations. I’m grateful to have had all of you cheering us on, long before and during this program. When Robbie was a few days old I looked down at him and caught a glimpse of a young man, head turned to the side with a little smirk on his face. It’s been clear to me for some time that it was Robbie who was sent here to teach us something, and not the other way around.