Days 5-8

Apr 17, 2017

4 min read

First off, Happy Easter to everyone! I want to make sure we remember what is important, HE HAS RISEN! Without our Lord and Savior, we would not be able to get the help our son needs and HE has wrapped his arms around us during this difficult time and given us strength. When I'm worried, it is usually because I am trying to do everything myself. When I'm at peace, it's usually because I remember that GOD is in control.

Sweet Aspen on Easter morning below :-)

This has been a HUGE week! Sebastian has started EATING!!!!! I want to be clear in stating that we are at the beginning of this journey still....BUT he has begun to eat bites of pureed foods. I know that sounds like a step backward, but they have to teach Sebastian compliance first and foremost. Once they have established very consistent compliance across therapists and ME, they will then introduce table texture foods. They have to reteach Sebastian how to chew food and strengthen his tongue so he can lateralize food more efficiently. Who would have thought so much goes into eating??

On a positive note....Sebastian found himself a girlfriend at the feeding clinic during recess :-)(see below)

So Tuesday was our first day of actual treatment.....we completed all of the assessments. Woo-hoo! They asked me if I would be open to an aggressive approach to see how he responds. Good news is IF it is going to work, it usually works quickly. Bad news is it is a brutally hard process to watch.

The process: Sebastian is put in a 5 point harness chair, the bite of pureed food is presented to Sebastian, and is touching his lips at all times. There is no attention given to him (no talking, eye contact, etc.), no toys, and nothing to distract him. He is given 5 seconds to take the bite, if he doesn't within 5 seconds, the therapist will deposit the food in his mouth at her first opportunity (i.e. basically forced)....however, usually he is screaming crying so his mouth is already open. He is given 30 seconds to swallow the food, if he doesn't swallow the food within 30 seconds, the 2nd bite of food is deposited. Mind you- the 2nd bite is a different food. This continues until 4 bites of different foods are in his mouth. TRUST ME- I was like what, eww, why are you continuing to shove food in, and why 4 different foods...gross!

However, there is a method to their madness. First, we are teaching him that just because he doesn't swallow, doesn't allow him to escape eating. Second, a common characteristic of Autism is rigid behavior, and we are trying to break him of that by accepting foods on our terms and not his. If he wants one food in his mouth at a time, he needs to swallow the first bite in a normal amount of time.

The really gross part....if he spits out the food, they will scoop it back up and redeposit it. Again, just teaching him that expelling the food is not an option or a way to escape eating. If he vomits, they will not redeposit, but will continue feeding him, for the same reasons I just mentioned.

Tuesday and Wednesday were REALLY HARD days....he was basically strapped down and force fed, and would NOT swallow the food....so he had 4 bites of food in his mouth every time. They wait him out for 10 minutes....and then clean his mouth out after 10 minutes.....which they ended up having to do nearly each and every time. Not to mention, picture him kicking and screaming (at the top of his lungs) the whole time. Torture on a mom! And then suddenly in the middle of a session....he SWALLOWED the food! It was AMAZING!

Now as amazing as that was....there is a lot more to eating that just swallowing the food. The goal is to have zero problem behavior (i.e. no crying, fussing, head turning, pushing the food away, etc.) I mean it is great that they got the food in and he eventually accepted it, but we want it to be an enjoyable experience.

I could go on and on with the details of this feeding experience....when they say INTENSIVE, they freaking mean it, lol! To make a long story short, Thursday they started to get really good compliance, like 90% good behavior, with no crying or hitting/kicking while eating. He was willingly eating pureed bites of the following foods: potatoes, chicken, pears, green beans, yams, baked beans, carrots, and pineapple!!! Hallelujah!

Then on Friday, they threw me for a loop and put me in the therapist role. And let me tell you....there are a thousand rules to this role....and they are not natural whatsoever. They said to expect a huge regression...seeing as it took us 3.5 years to get here, and Sebastians knows me well, and knows exactly how I USED TO react to each and every thing he would do. Well.....surprise surprise....Momma has changed her ways. There is NO giving in, no attention, no convincing him to eat, no begging, no negotiating, no getting frustrated, etc. I DID IT! And not only did I do....he responded! He ate the food! Now, there was still problem behavior, but he ate the food that I fed him, which is huge! As Friday progressed through multiple sessions.....GUESS WHAT???? By the last session on Friday....Sebastian had a perfect session....ate all of his food with ZERO problem behavior from ME!!!! God is so GOOD!!!!

I mean seriously, this is all God! We give glory to HIM! We are so blessed and grateful!

We pray for continued progress (especially after a weekend), and cannot wait to see what this week holds!!! We were told to expect him leaving on pureed foods during admission, but with this AMAZING improvement....we hope to start table texture foods while we are here in Omaha! Woo-hoo!

In other news, the kids had a wonderful weekend and Easter! We went to the Omaha Zoo & Aquarium (which was seriously the BEST ZOO....like I would highly recommend going if you're ever in the Omaha area....haha! ) See pictures below ;-)

Thanks for taking the time to read this LONG update....we cannot express in words how much your love and support mean to us! Please continuing Praying! "The power of prayer cannot be explained, but it can be experienced." We are experiencing it every day and are so grateful! Love you all!