Monday, February 27, 2012

My Momma Said There'd Be Days Like This!

It might be more appropriate to say "Weeks like this". Winter in Wisconsin can be a beautiful time...

...but it is also a time of sickness, viruses, sinus issues and let's add in hip pain. It appears that our changing weather fronts are causing havoc with Sam's hip. We were in an upswing with more mobility, no traction and improved stability when walking. I quickly thought Sam's new supplements were finally heading us down the right track and they still may be but Sam's hip is still causing him issues. In the last couple of weeks Sam is doing more crawling, less walking, more time spent in the recliner, his frustration level is up and he is whining. Here is Sam today putting himself in traction for the 2nd time today.

Now add two teenagers with sinus, colds and unknown viruses and we have a recipe for disaster. I am also prone to sinus and migraine issues in the winter so we all get to commiserate together. One big happy, err...whining family of pain and general unhappiness. Oh joy! Ben is going in to the doctor today for a possible ear/sinus infection. Danielle will be starting rehab for her knee injury from volleyball (great more therapy sessions in a week). I continue to rub Sam in with oils, diffuse them into the air and struggle to get him focused on learning something...anything...even just a daily life skill or two.

Our current focus has been on something near and dear to Sam's heart....eating! My goal is to get Sam making meals for himself. It seemed like such an obvious and simple goal. We all eat, we require food and eating is one of Sam's favorite things to do. seemed easy...until I tried teaching him how to make breakfast. Sam struggles with auditory processing...let me explain that in laymen terms. Sam hears but does not listen and comprehend well, he often tunes people out when they talk because it is too difficult to follow. I kinda picture Sam's processing like the old Charlie Brown movies where the teacher would talk and all we would hear is "Wah wah wah wah wah". Sam tends to pick up on the first and the last word or two of a sentence. When people ask Sam "How are you?" he will often say "11 years old" thinking they asked "How old are you?" If they have that confused look he will then quickly say "I'm good" and smile. Sam struggles to follow auditory directions. Sam has both a hearing and processing issue so something we take for granted, understanding the spoken word...eludes him. Now that doesn't mean that Sam can't follow directions or understand concepts it just means it's a ton of work for him to hear, listen and comprehend and it is imperative to work with him in a way that works and makes sense to him. It's equally imperative to be patient with him, give him time, allow him to express himself and work with him in order to hold a conversation. One of my favorite things about Sam is when we are working through a conversation and I'm answering appropriately which means I've understood and interpreted what Sam has said...the look on his face and how his eyes light up is priceless. Now did you read that last line? That thought process is what keeps me talking and communicating with Sam each day. It is work to converse with Sam. You have to be patient, interested, listen at a level that most people will never develop. You have to be present, in the moment, committed and you have to enjoy the experience. It is a lot to ask of a person...but isn't that what we are asking of Sam and even more??? We are asking him to work through his hearing issues, pick up what he can, process it and figure out the missing pieces, pull out an appropriate answer, manipulate an articulation system that has some broken pieces and respond. Ask an adult who has suffered a stroke how frustrating it is to communicate. That frustration can often lead to depression or anger but the part that amazes me about Sam is no matter how frustrating the process he continues to work with me. Teaching Sam to make a breakfast is a challenging and patience building experience. Let me share the journey with you.

Sam's breakfast usually consists of 2 eggs made in coconut oil, 2 slices of gluten free bread with ghee butter and organic cinnamon and a glass of apple cider or fresh squeezed orange juice. The first part of working with Sam is to show him the expectation so I demonstrate making the breakfast. I show him where each of the items is stored and I walk through making the breakfast. For most neurotypical kids this step would be enough to complete the task. Not so for Sam. We began with locating and getting the items he needed for his breakfast. I first tried to walk him through step by step auditorally which failed epically within the first couple of instructions. He got frustrated, sat on the floor and refused to even acknowledge that my lips were moving. Okay...regroup...I'll write out the instructions because Sam's reading is stronger than his ability to follow auditory instructions. So I wrote out the instructions and Sam struggled with processing the whole sentence and finding where he left off so he kept trying to start from the beginning each time. Frustration x 2 = Mom and Sam looking at each other hopelessly. Okay...regroup...what if I do a visual guide. Walah...a visual guide to help direct Sam on what he needs for breakfast.

I showed Sam how to use the guide and he really enjoyed watching me but when it came his time to follow the guide...not so much enjoyment. He got a plate and called it a day.

Whew time to rethink. I know Sam wants to eat, I know he can follow a visual guide...yep...I'm pretty sure this is behavior. Time to switch over to my behavior analyst hat. This does require walking around the kitchen and the hip is a wee bit painful lately so we will place a chair centrally located in the kitchen for a rest stop. Sam was happy to just sit on the chair and say "NO" when asked to get out his breakfast items. Grrrrr...I know you can do this Sam. It's time to pull out the big guns. I say "Sam, you do or no breakfast." Said with an authoritative"I mean business" tone. Sam understanding his lack of doing means no food is starting to get his attention but he is still whining and refusing to proceed.

Sometimes with Sam, the best thing is to walk away and let him think about it. I again using my best "I mean business" tone say "Sam, you do or no breakfast." "I'm taking my shower" "Sam do it". I walk away feeling somewhat deflated, teaching when it doesn't work is very deflating to the ego. I'm not asking him to prepare a gourmet breakfast for the two of us and have it on China by the time I finish my shower. I just want him to pull out the supplies needed to make breakfast. As I took my shower I tried to keep positive thoughts that he was doing it but if I'm being honest I kinda figured I'd be regrouping again.

I finished my shower, got dressed and headed to the kitchen. I was happily surprised to see Sam sitting in a kitchen chair with a smile on his face. This is what greeted me on the guide.

Okay, not perfect, but it was an attempt and I rewarded him with a high 5. We then looked at the guide and I was able to quickly walk him through the corrections that needed to be made. I gave him the benefit of the doubt on the bread because his bread only had two pieces left and it was under the bread he pulled out. The pan he chose was conveniently sitting on the counter so he didn't stress himself in getting the right pan out of the cabinet. The salad dressing I believe was Sam's attempt at humor because he couldn't wait until I asked him about that item. He smiled and even laughed a little when I asked if we use salad dressing for breakfast. He quickly told me "cinnamon" and got it out. The items missed were quickly found and placed on the guide. He did it and the look of pride on his face was hard to miss. The next day it was easier and each day it has gotten easier except when the hip is hurting too much.

The next step is to show him how to make breakfast. To most of us it's pretty simple, but take a moment and break the steps down to single instructions?? Yep, are you feeling more challenge and fun is about to befall us. My first instruction was regarding the toaster. Sam was happy to get the toaster out and plug it in. I was encouraged, even feeling a little confident that this was going to be the easy part.

And then it happened.

I asked him to get two pieces of bread and put them in the toaster. A simple instruction unless you struggle with fine motor skills and those two little pieces of bread are being held hostage by of all things, a twist tie. The twist tie is a seemingly harmless invention created in 1939 by T&T Industries unless you are Sam Mayer and it is the obstacle that stands between you and those two pieces of yummy bread. The twist tie was the end of the cooperation. I tried to show Sam how to untwist the tie but he wanted nothing to do with it. My mind began to figure out a compromise. I could put his bread in a ziplock bag...but then...I pictured Sam as an adult at the grocery store unable to buy anything that had a dreaded twist tie. Damn you, twist tie! You won't win this battle. To work on the twist tie I would bag some of Sam's favorite snacks and have him master the twist tie. But Sam is no dumb bunny...he simply ripped the plastic and left the twist tie intact. Hmmm...I found some wire ribbon, kind of like a big twist tie and I wrapped it around his Ipad. He tried to pull it off but I made sure it was pressing into the rubber cover and then I saw the thought process occur. He was replaying my instructions, "Gwab tie and twit". In my mind I'm pleading with the powers to be to have him "twit" in the right direction. And it happened, he got it and again the look of pride and "I can do it" knowledge was upon him.

The next morning he grabbed that bread with gusto and with the words "Gwab tie and twit" it was opened, the bread was in the toaster and he pressed the button down without me saying a word. I was so proud of him. Another seemingly simple instruction accomplished. Our next step will be to remove the hot toast and butter it. And he'll do it. The bread may be in pieces the first couple of times but with patience, persistence and practice that skill will be learned too. I'm still trying to wrap my mind around cracking the egg, putting it into the pan, turning on the burner and flipping the egg with the spatula. Yikes!! What I want to demonstrate is the technique of breaking it down into doable steps and what I want to convey is the courage and encouragement to take those steps. Is it work?? Yeah...but someday when I come over to have breakfast with Sam that he prepared for us at his house...I will smile!!! At any point I could choose to give up, to take the simple way out and just continue to make Sam his breakfast. But Sam is teaching me to appreciate the small steps, to realize and problem solve the things that could defeat us and to keep moving forward.

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