As yesterday was the queen’s birthday, i wanted to make the ode to The Queen post for her.
We did the normal thing that most parents do after a diagnosis; we looked for the tangibles, the things we could do to make her better.
We started with her hearing.
I took her to an audiologist to get her hearing checked. HA HA HA HA HA HA HA! I don’t know who thought I could put Emma in a sound proof room with head phones on while she waits for noise to come out of them but they wanted me to. When testing her hearing we found that her right ear had a flat bell shape. A normal ear makes a bell shape when the sound initiated is heard correctly. The doctor sent me home with some drops, thinking that it just may be some fluid build up and to come back in a week. I made the appointment for the following week and left.
When I returned, it was a 45 minute drive from my home to the office. I checked in and I waited for my turn in the waiting room. It was a very large area in that it served many doctor’s offices. Lots of tables with magazines waiting to be knocked off, plenty of old people to watch me and tsk-tsk, and very few toys. I had my three little ones 8 months, 22 months and 3 years old.
Keaton became obsessed with the elevators and pushing the buttons. I was carrying Ben, trying to chase down Emma and keep Keaton away from the elevators because the he would make the doors open and close constantly. The time kept ticking on. While I was chasing Emma, Keaton finally got the elevator door open without me close by and decided to go into the elevator. I turned just as the doors were closing making eye contact with a very panic stricken boy.
I grabbed Emma and put her on my other hip, as Ben already had occupancy on one, and began running down two flights of stairs. Keaton’s screams could be heard all through the medical building coming from inside the elevator. I had to beat the elevator down and be there when the doors opened.
I pushed the button to take us all up, marched right up to the receptionist with a child on each hip and Keaton following me still crying asking her calmly what room the doctor was in. She pointed and said he would be right with me. I did not care about the “he will be right with me.” I had been waiting almost an hour for him to be right with me!!
I continued my Genghis Khan March to the marked door and kicked it in as my hands were full at the time. Not only was the doctor surprised, imagine his patient that saw a very flushed, angry young mother with three little children demanding to be seen NOW! I told him that if he is going to make an appointment he should really keep that appointment.
He checked Emma’s ear, something that took less than a minute and found her hearing to be perfect. He is the first and only doctor I have ever done that to. Every one has their breaking point. As I walked out the door and down the hall to the waiting room the nurse, doctor and receptionist just stood there staring. Let them stare!! I was leaving and never have been back since.
Next I had read that food allergies can cause what seem like symptoms of autism so off the epidemiologist we went to have Emma tested for food allergies.
I did not know that testing for allergies meant making scratch marks on her back to they could add concentrated amounts of different allergens to see which one reacts. What I a barbaric way to do things. I was horrified. We found out that Emma was indeed allergic……to carrots. Carrots?! Shoot, I don’t even eat vegetables. Carrots were the least of our concerns.
The doctor had us come into her office to discuss the results and felt it was her duty to tell us not to get our hopes up with Emma. She proceeded to tell us that he nephew has autism and they had done everything for him and nothing can be done. She continued her little speech stating that she came from a very intelligent family that has lots of access to medical studies and research and to just believe her.
She gave us this speech all the while leaning on her desk with her head resting in one hand. She came across very arrogant. If there is one thing I can’t stand it is arrogance. Arrogance just because they feel they are more intelligent somehow. It makes me want to prove them wrong that much more.
My experience with doctors was not going very well up to this point. I became acutely aware that they had no more of a clue than I did about what avenue to take to help Emma along. I also became aware that this was not going to be an easy fix.
My dad said that he had always heard the term “blank stare” but had never really thought it existed until he would watch Emma.
Her eyes showed no emotion. She truly was blank.
This chapter on Emma has been so hard for me to write. I have thought so much on how to explain what we have done, steps on getting her from point A to point B. We have been working with Emma for 11 years now. Her progress has been so indiscernible at the time but has culminated into a beautiful, full of life, giggles, laughter and social interactions that are our Queen.
She is now termed a social butterfly by those who know her. She does this without uttering a word. Her eyes say it all. She is no longer a blank stare. There is no one moment where I can pinpoint and say this is where the change began, that this is where we turned the corner. If I were to try to pinpoint anything that helped Emma the most I would say it was play.
We played with her. She was not “in her own world” she simply did not know what to do to come into ours. Her brain was not telling her to play, interact, imagine. Things that we just assume come naturally to everyone. She needed to be taught to play.
Of course I have been discouraged and disheartened. She has kept us guessing from day one of her diagnosis and I don’t think she is done by a long shot. If I were to predict life for Emma eleven years from now, I would say that yes, she will still be living with us, but I also feel very strongly that Emma will be communicating with us.
Why do I feel this way? Not for any concrete reason I can give you. Just by watching her and above all, as I keep bringing up, because I hope that she will be. I hope that she will be happy. I hope that she will be able to care for herself. I hope that she will always reign as the Queen that she is.