We've settled in since we arrived home. We're starting to get the hang of things (never mind the 3 hour shopping trip to Target and our experience in GNC listening to the 17 year old behind the counter tell me the Ketogenic diet sounded sketchy...anything that would recommend Saccarhin...a cancer causing poison...should be illegal according to him.) It took me 48 minutes tonight to prepare Kendall's formula and 2 25 calorie snacks for tomorrow. I'm sure it will get better and our next shopping trip won't involve my 8 year old checking labels as I read off the approved ingredients...or talking to strangers in the isles about where on earth to find liquid saccarhin. *by the way, we ended up getting Stevia...an approved 0 carb sweetener that is derived from a plant.
Kendall is eating. She loves the KetoCal and the "egg nog" heated into a custard. She also loves jello and cream and turkey, mayo, and cream. She loves them so much she cries when the 2 bites of the 25 calorie snacks are finished. I do believe it is time to replace one of the formula feeds with solids.
I mentioned before that I read "Blue Sky July." I savored every word of it. It was touching to me on so many levels and I didn't want it to end. I felt like a new world had been opened up to me when I finished it. I felt hopeful for Kendall and our future. I felt validated in all of my emotions the past 14 months. Things were definitely put into perspective for me once again.
Throughout the book she spoke of "patterning" quite a bit. I have not had a lot of time to research this (by the way, I don't think "googling" something counts as research!!! I think its helpful, but I also think people should be leery of reading things on the Internet that are not research based!)...but what I was able to read really got me thinking outside the box.
I have never really been an "alternative therapy" type of person. Until recently.
Our experience in the hospital and being grouped into a category really got to me. So, this "patterning" really spurred my interest. Up until now, I have kind of left Kendall's therapies to the experts. I trust their decisions...Don't get me wrong, we work with Kendall EVERY.SINGLE. DAY. at home. My mom has turned into the best PT! And Justin, Kamden and I work with Kendall every chance we get. Its just that, we're not professionals. We don't have the schooling or experience working with kids like Kendall! But I do have common sense. (most of the time!)
Patterning is based on the concept that a child should learn movements in the same order that a normally developing child would. Like, repeating the movements of crawling before walking, etc.
When I taught 3rd grade for 5 years at a school that was 90% economically disadvantaged, one of my main frustrations was we were expected to have children who couldn't read pass the stupid TAKS test. My lovely state of Texas and its "No Child Left Behind Act" pressured teachers to focus on the test instead of the child. Our wonderful politicians (TOTAL sarcasm) tend to be motivated by dollar signs, as do our text book companies. Leaving the teachers with their hands tied. One of my main factors in leaving the teaching profession was how emotionally draining this became. I often asked why we were focusing so much on the test when these kids couldn't even piece together words. Shouldn't we teach these children to crawl before we expected them to run??? Common sense, right? Shouldn't we put more money into early intervention for the schools that needed extra help instead of the schools who already had what they needed??? ugh.
So why then, do I have Kendall standing in a stander? Why am I not focusing more on the steps it takes to get her there naturally? I remember learning how to wake board. It took me a really long time to get the hang of it. My muscles were learning something new, but after repetition, it eventually came full circle and became second nature. It seems like common sense to me that "patterning" would be the way to go! Creating new pathways for her brain. Rewiring the areas with broken pathways. I get that some kids don't have families that will work with them every day, but in Kendall's case, we will. SO why is this considered "alternative therapy?"
I have not read the books from The Institutes. Things that sound "cultish" kinda scare me. This write up on Patterning also makes me question its validity. But I'm starting to think that it is my responsibility to gather all the information and find what is right for Kendall. Its up to me. Our team of therapists and Dr.'s are great, but they don't know her the way I do. At all. They see her MRI's and EEG's and think of things in statistics. Maybe I've been guilty of that too. Maybe I have just accepted the things they've told me...but not anymore. Kendall deserves more.
I'm not going to run out and throw away our standers, chairs, adaptive aides. I truly don't know how I would function without some of this stuff, but I do think I need to take a step back and get back to the basics. I will also be exploring new therapies and options. (and praying the seizures stop completely so therapy can have an opportunity to make a difference)
This will be a full time job...
But my kids are the MOST important thing in my life and I will do what it takes to make sure they have the best.