Apparently I have a reputation! Now, before you let your mind run wild with what that could mean let’s go back to how it all began …
When it came time for Elizabeth to begin school I had the option to integrate her in public school, allowing her to go to school just like everyone else, almost. She would be in what at that time was called the “self-contained classroom’ which sounds almost as demeaning as it was. I could hardly bring myself to even say the words and would use other ways to describe her days at school. I would tell people she was in the 6-1 classroom or she was a part of the special ed program, somehow it just sounded better than she was locked in a classroom with no windows all day with the same 5 peers and a handful of aids. I also had the option of homebound which would allow her to stay home and have a teacher come to the house for her educational needs or I could obtain a script from her doctor excusing her from school all together and keep me out of the court system for truancy. As our followers know by now Elizabeth absolutely loves school! She is such a social butterfly and has found a way to fit in with her peers outside of her own classroom. Believe me it would have made my life so much simpler to have her home everyday. Mornings are rough …. it’s not at all like walking down hallways of the other kids bedrooms, flipping on lights and threatening to take iphones away if they aren’t up in 10 minutes! It’s no less than an hour of changing, dressing, feeding and medications. By 6:30am I am ready for a nap and the 3 cups of coffee will hardly be enough to make it through the next 2 hours of drop offs! But this girl loves her school and her friends … she hits that hallway of Har-Ber High School making sure she is hollering “hey” and blowing kisses down 2 hallways and all through the rotunda!
Having Elizabeth at school comes with a list of do’s and don’ts; instructions for everyone from the front office to school nurses, teachers and parapros. There are 4 feedings, changing, positioning, medications, communication devices and then there is me … Mom; which probably comes with more fear than all the above combined! I remember growing up hearing people talk about my dad when they would find out who I was. It is actually something we joke about now. Oh you know my dad I will say … so are you one of the few that like him? Okay actually everyone loves my dad but back then when he was practicing there was this conversation. I would hear things like “oh he is really mean in the operating room” or “he is hard on his nurses and OR staff” and my favorite now is “has he mellowed out any?” I was always proud of my dad and his “reputation” that he had acquired, so proud in fact that it’s the one thing I have mimicked in my care with Elizabeth. I mean let’s be real here …. if you needed a brain operation wouldn’t you want the best? Wouldn’t you want that doctor that demanded perfection from his staff, from his nurses, from those around him? Wouldn’t you want that man that only wanted the best outcome for you and had only your best interest literally in his hands? Well, this is how I feel about those taking care of Elizabeth and it doesn’t just stop with her doctors. I want the best school environment, the best teachers, the best classroom aids, the best nurses and school admin.
Elizabeth is a smart girl, something very few people really know. When you look at the scans of Elizabeth’s brain you almost have to agree with the doctors on principle alone. To them they see science, they see a 15 year old who has no capacity of learning or understanding so let’s wheel her into a classroom and let someone babysit her for 8 hours a day. Turn on her laptop, let her watch cooking videos and listen to a little Luke throughout the day and she should be fine. Look, I get it … I was raised by a doctor whose life centered around the practice of medicine, the practical side of scans, medical reports, articles and journals full of documentation that said a girl like Elizabeth could never learn. And if you know my dad, then you know me and you know we know differently. We believe differently. We believe that there is a reason it is called the “practice of medicine” because there needs to be room for the exception to every rule in the medical field. And Elizabeth has shown us time and time again that she lives her life as the exception. Deep down in that crazy messed up brain of hers that bled 5 times at birth and bled so badly she can’t walk or talk today … there is something in there that is allowing her to learn and how can I not cultivate that love for learning? Realistically speaking she doesn’t learn on the same level or in the same settings as her peers but that is why we have the Special Education program in place, right? This is why we have teachers who have a heart for those that learn at their own levels, who learn differently than the traditional classroom teaching. And this is why I am the most feared person at the table on IEP days!
So now that you are caught up on a little background let’s go ahead and address the rumor! Having Elizabeth in the right elementary, middle school and junior high were very important to me and we changed schools a few times finding the right ones that would best meet Elizabeth’s needs. Now Senior High was going to be a game changer. Elizabeth will actually spend more than 3 years in high school so finding just the right one was going to be a challenge. During her IEP meeting in junior high I was told which high school she would be attending which I told them no to. I was told things like but you don’t have a choice, this is the best one for her, she will be fine so stop worrying. This meant one thing …. that was not the right school for her. I spent the next few months researching, calling and visiting our local high schools both in and out of district. I spoke with friends, therapists and other teachers and decided Har-Ber High was the best place for her. She had a few friends, both in and out of her classroom there and felt she would be welcomed and accepted by all her peers. It wasn’t going to be an easy fight but I was ready for battle for this girl. I would have to prove why she needed to go to a high school 30 minutes away when we had one in our backyard. I would have to convince the admin that she would have a better opportunity to excel and learn when some of them believed she was just a girl in a wheelchair who wouldn’t be a sports star or their next valedictorian. Getting her transferred wasn’t nearly as hard as I had expected although we had some challenges along the way. The hard part came those first few days of school. I was front and center in the classroom on day one. I was the ONLY parent in the classroom!! I wanted to meet everyone, okay that’s not entirely true … I wanted to make sure they knew how to take care of Elizabeth and of course I wanted to meet everyone! By day 3 I was still coming into the classroom and hanging out just a little longer than I probably needed to! In fact, I was spending so much time in the hallways during school that the school had to come up with a Parent Hall Pass just for me!
I am sure any one reading this is not one bit surprised! I stayed late, came early … text, called and asked questions every day. So it wasn’t really surprising after the first couple of school I was approached in the hallway by one of the staff who said
so I heard you were a bit of a hardass …
Wait, I have a reputation? People are talking about me? They went on to share stories of how Elizabeth’s mom has high expectations, that she will not settle for anything or anyone but the best for Elizabeth and how she was known for surprise visits, not being afraid to tell you to do it differently and apparently there is a look I am known for … yes that’s right a look! I tried to play it off and assured them I am really easy to get along with (not really) and all that talk was just a silly rumor. When I came home that night I hit the door with …. well rumor has it I am a badass, which Mark quickly corrected and said do you mean hardass?! Great …. the rumors ARE true as my husband had just confirmed it without even knowing the entire story! And as with any good rumor, you must address it so here goes!
I am Elizabeth’s biggest advocate, I am my daughters voice as she does not have one. I have spent the last 15 years fighting for her, fighting with her for what she deserves; fighting for rights, tolerance and acceptance. In Elizabeth’s eyes everyone is equal, everyone deserves the chance to be the best, to have the best and to give their best. I want to be a reflection of who she is, of what she believes … I want to be her hero.