Journeys

Many journeys I have taken, many lessons I have learned with each milestone my daughter has reached. When Katie was young I scoured every SPED type article I could find. Read every word and advertisement in “EXCEPTIONAL PARENT”. I learned early on that when introducing a new task or activity one should discuss it, model it and practice it. Unfortunately I am too lazy to implement each of those steps and spent most of our time, “winging it” and hoping for the best. For you to better understand my version of “winging it” you need to know that for me it meant: getting an idea, grousing to myself “How on earth could she actually do that?”, stewing over it, procrastinating on moving forward with the idea, sharing my thoughts with anyone who couldn’t run fast enough to escape hearing my litany, taking advice from the wonderful fans of Katie, presenting the idea to her, talking about every single aspect of what to do/what not do and how to react in case things go awry, then tossing her into the situation, hoping things would go well. In the meantime I would be pacing the floor with a phone glued to my ear telling everyone what was happening, then being totally surprised and happy that it all went well.

Last summer was no exception to my laziness rule. Summer water exercise class hours happened to fall on two of the days that I was working at Black Hawk Area Ed Center, not far from Black Hawk College. I thought that an excellent way to sneak extra exercise in would be for Katie to walk from the Center to the College and go to the water ex. class. Then I could pick her up when I finished work for the day. This would be her first foray going for a walk alone to get somewhere (other than walking to or from my parent’s). You must be thinking, “she has ridden that route hundreds of times, of course she will know the way.” That would be true for most people, but when one falls asleep the moment one’s bum touches the tuck and roll upholstery, whatever is passing by the windows is non-existent to the sleeper.

After getting the idea and grousing, stewing, procrastinating, and all of my other winging it phases, I sent her out the front door of the school once I had adjusted the straps of her backpack laden with swim gear. Immediately I had to share my angst with the first person I saw. Her first response was, “I can drive her there, do you want me to stop her and drive her there?”. I told her that I wanted Katie to continue, I just hoped she would make it there and remember to call me when she arrived. Bless her heart, this woman then offered to follow her and spy on her to make sure all was well! You have heard me say this before, but, people are so good!

We evaluated the areas that I thought would be problematic.

1. turning the correct direction out of the parking lot.

2. pressing the correct “walk” button on the stop light at the busy intersection.

3. after entering the pool building, steering clear of the vending machines! This, of course caused the most consternation, but we agreed, and so did the second person I dragged into my drama, that she would be so focused on her mission of getting there that she would not be tempted by the snickers and sun chips. One can alw

ays daydream, plus I decided….we decided that the experience outweighed the possibility of a vendo-gorge.

I was smugly happy with the adventure when my son phoned; my exceptionally reasonable, rational son cried, “you did what? you sent her walking by herself to Black Hawk College?!” at which point panic started to well from my toes. “Oh my gosh!” I thought, “if he thinks it is a bad idea there must be some aspect I didn’t consider.” Upon further discussion I discovered that he thought I was working at my other school for summer school and that I had sent her on a trek across town! Whew, once again I was happy with the adventure. I expected her journey to take an hour so I was pleasantly surprised and relieved when after 30 minutes she called me to say she had arrived without a hitch. Later in the day she explained that when she pushed the walk button she had to run to cross all of the lanes and still didn’t make it in time

Imagebefore the “orange man” showed up. She calmly said, “I put my hand out to stop the cars from coming at me. Next time I’ll have to run faster.”

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If She Can Do It, So Can You!

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In our society you do not need a calendar to know what season it is. If you listen to the conversations around you it will be evident. During the summer the talk is of  bikini-ready bodies, flip-flops and suntan lotion. September brings freshly sharpened Ticonderogas, football games and Homecomings. Food, food and more food starting at Halloween and gracing every table, desk and counter-top through New Year’s at which time, for the next three months or for as long as their resolutions last, you cannot be near more than two people without one of them mentioning new exercise routines, diet recipes and how on earth they will ever survive their new weight loss regime.

Each of these seasons presents challenges to everyone, especially those living with Prader-Willi Syndrome. For anyone  who is not familiar, I will hop on my soapbox for a moment and explain a few of the PWS basics that affect Katie. One:  uncontrollable appetite due to non-stop hunger; an ever-present feeling of insatiability, yeah, you only think you have that. Now, pause for a moment and delve into your memory to the last time you felt real, physical hunger and imagine that as a constant during wakefulness and sleep. Two: low metabolism causing the utilization of fewer calories. By fewer, I will tell you the results of a metabolic test that she had done once showed us that her body needs only 880 calories a day to maintain. Three: Decreased muscle tone, this is what I fault for her lack of balance and coordination although that might simply be because she is the daughter of the clutziest woman on earth. Four: Back pain due to scoliosis. Now that you have had a crash course on a few of the reasons weight loss and dieting can prove to be problematic for Katie you will better understand how awesome she is.

Katie and I have joined a local Biggest Loser Contest, we are a part of 50 contestants. Although we are competing against each other every week for 3 months, I wanted to write that we are a part of a 50 member team. Through the encouragement of Josh, our “head coach” everyone is supportive of one another, we are all in this together with a common goal. I would be happy to not win any of the $50 entry fee if I could just drop some of this weight. I listen to the struggles and the plans and the confidence, or some days lack of confidence of the others and I think it is amazing to see their dedication and their strength. I know that we all come into this with our own baggage, both physical and mental baggage, but then I think of Katie, who has these extra challenges that are innate. I have the privilege of watching; her concentration as she (oh, I forgot to mention the need for insulin four times a day due to a secondary diagnosis of diabetes) calculates her carbohydrates, her calories and her insulin, her determination as she vigorously works out during a water exercise class, her perseverance as she starts her third quarter of a mile during lap swimming, her exuberance during a rockin’ Wii Just Dance session, her stupendous awesomeness while participating in and completing two 5K s. I have included photos of those incredible days. The first year that she was in a 5K was a bitter cold day, after the start off, she was alone behind the rest of the participants and from the sidelines I tried to encourage her to cut through a parking lot thereby eliminating the one and only hill portion of the race, she vehemently refused and said that she had to stay on course because she had a chip in her shoe! You will find her name next to the entry of the word integrity in the dictionary. She plodded along, down hill and up, in one of the pictures in the attached link, you will see a woman wearing the number 41. She is a total stranger who after finishing the race, ran back to the half way point to walk alongside Katie during the rest of the race. Please take special note of the time clocks in the photos, you will see that in her second race, the one with much nicer weather, she got a new PR beating her time from the previous year.

If you are one of our Biggest Loser competitors, anytime that you get discouraged or think that it is too difficult or you are faltering I want you to think of my remarkable daughter who is in this with you. If she can do it, so can you!…. So can I!

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