Today was one of those days where I wish I could have stayed curled up in my bed for the entire day. If anything, it would have saved me from this migraine I've endured the last few hours.
The beginning of the day started off great, however. I slept in, had breakfast at my parents, picked up Cheyanne, and headed off to Mansfield to pick up a tablet for my customer and a few phones for the store. While I was at my store dropping off all the equipment that's when it all went down hill. Cheyanne started heading to the door and had the uncomfortable 'I have to go potty' look. It wasn't uncommon of her to deny that she has to go to the restroom whenever I ask, but the look on her face struck me a little differently. She pointed to her chest, stopped talking, and couldn't explain to me what was going on or if anything hurt.
I sat her in my lap and continued to ask her what hurt, she finally responded by shaking her head yes when I asked her if she was okay. So, I asked her to sit on the chair while I finish up some business at work. She sat down and continued watching Ariel on youtube and then started doing this new burping/gagging episode that she has just recently discovered gets her attention. There's really no easy way to describe it because I've never seen another child do it. It's typical of her to do it when she gets very agitated because she's not getting her way but this was the first time it was unprovoked. I grabbed a trash can because I thought she may have to vomit, but she continued to hover over the chair grasping for air and continuously burping. I pushed the chair out of the way, sat down, and put her on my lap. I looked into her eyes and saw the blank stare I've often witnessed before the beginning of one of her seizures. I laid her down on the floor and put my hand under her head, there was no carpet anywhere... the only choice I had was to lay her on the tile floor. And I waited, I still wasn't 100% sure that this wasn't fake.
Her face would turn bright red, her body would tense up and shake, she'd clinch her fist, hold her breath, grasp for air, burp, and then it would start all over again. At this point my manager that was witnessing all of this was baffled and I'm sure disturbed by her odd behavior. I wasn't exactly 'non-chalant' about the situation but this definitely wasn't my first round of abnormal responses. I've learned to tone my panic down, search for any triggers, and try my best to calm her down. I laid down beside her and all I knew to do to calm her down was talk to her. I rubbed her back and repeatedly told her that she was going to be okay and that I was there.
At this point the episode was dragging on longer than usual, her lips started looking dry and it's a good possibility that this could be the hypochondriac in me but her lips started looking a slight shade of purple. So, I gave my boss the go ahead to call the paramedics. He continued spouting off questions about Cheyanne's medical history, while I'm trying to call the only other autism mom in town to get any type of reassurance, and trying to calm Cheyanne down. I felt a slight anxiety attack of my own coming on.
The moment the paramedics piled into the room Cheyanne sat up and started 'tying' her shoe? She just twists the laces together over and over, it has become one of her new obsessions. I sat there staring at my child angry, hurt, and completely embarrassed. There were eight or nine paramedics scrunched into the tiny office looking at me, I'm sure wondering where the child was that was supposedly having a seizure. Thankfully my manager was in the doorway to vouch for me not being completely crazy. The paramedics and firefighters were more than understanding, especially when I told them that she was autistic. I explained to them that I just put her on the GF/CF diet, about her abnormal EEG, and how she has done this in the past when she got upset. The EEG came back abnormal because of the patterns and tendency of seizures due to light, but they couldn't officially diagnose her with epilepsy because none of her seizures were caused by light. The paramedic told me that it's highly unlikely that the diet could have caused it, but it is a possibility.
I had called my aunt during the whole episode because I needed someone there with me, she called my mom and told me she was on her way. I hear my mom running to the back, pushing past my manager, panicking, and screaming 'I'm the grandmother!'. I couldn't help but laugh because the moment my mom turned the corner she saw my daughter sitting there tying her shoe laces like nothing had happened. She looked about as crazy as I felt. Then my aunt showed up moments later. So, here we all were, the paramedics, my family, my boss, and I all staring at my beautiful daughter wondering what the hell just happened.
Since it was obvious there wasn't much of an emergency anymore, I thanked the paramedics and told them it wasn't necessary to drive her to the hospital. They understood and continued to reassure me that I could call if I ever needed them again. I have so much respect for these men in this town, they have always been so genuine and understanding every time I have called them out.
Once the paramedics left and we walked out of the office, Cheyanne smiled and announced, "I'm not sick anymore!". I still stood there in disbelief and tried to wrap my head around what had just happened. Was it a seizure? It didn't look like any that I had ever witnessed. Was it some type of over reaction to some pain she felt in her chest? Maybe some type of reaction to this new diet I put her on? Or completely faked?
I've always had trouble wrapping my head around the concept of autism, but today is one of those days where I feel so far away from an understanding and has me terrified of what the future may hold. Tomorrow is a new day, and I can only hope for a better outcome.
Sunday, September 30, 2012
Friday, September 28, 2012
I miss Cheyanne.
I spent an entire forty-five minutes with her today, and this next week I am scheduled to work three nights. I need to find a new job, yesterday.
Along with finding a new job it looks like I'm going to need to have another talk with Cheyannes teacher and the principal. At the beginning of this week Cheyanne had five dollars in her lunch account, she was sent home today with a note that says she's seventy cents in the negative. It's fair to say she bought lunch at least twice, when I specifically told her teacher that she was on this new diet and to only feed her the food I provide. This diet is a matter of her health, if this actually works I could save her from being doped up on meds all the time.
I'm going to try the nice approach one more time with this school, let's see if they'll try to push me over the edge.
I spent an entire forty-five minutes with her today, and this next week I am scheduled to work three nights. I need to find a new job, yesterday.
Along with finding a new job it looks like I'm going to need to have another talk with Cheyannes teacher and the principal. At the beginning of this week Cheyanne had five dollars in her lunch account, she was sent home today with a note that says she's seventy cents in the negative. It's fair to say she bought lunch at least twice, when I specifically told her teacher that she was on this new diet and to only feed her the food I provide. This diet is a matter of her health, if this actually works I could save her from being doped up on meds all the time.
I'm going to try the nice approach one more time with this school, let's see if they'll try to push me over the edge.
Wednesday, September 26, 2012
The answer you always knew but never wanted to hear.
Yet again, here I am with another blog attempting to find an outlet. My daughter, Cheyanne, was officially diagnosed with Aspergers a little over a week ago. The day of the appointment I made sure to stay busy, I threw myself into work and even went outside the store to promote small business accounts. The last thing from my mind was I'd finally get an answer to all my questions later that day, as much as I had been wanting it, I was that much afraid of it.
I was running late at work and ran out of the store with only five minutes to get to the psychologists office. The moment I ran into the office they immediately called me, my aunt, and my mom back into one of the offices. I had kept myself so busy that entire day I didn't have time to mentally prepare myself. I drew in a deep breath, sat on the couch in that small stuffy room, and promised myself I would not break in front of my family.
The psychologist, whose name for the life of me I can't remember, sat down with a stack of papers and started going over the reason we were there. I wanted to rip the papers out of her hand and read her diagnosis myself, we already knew why we were there was this really necessary? Then came the knock on the door, my head was spinning and I felt like I was in a soap opera, they were doing everything possible to delay the diagnosis. She left the room and the papers laid face down on the desk. I stared at them, debating whether or not I should snatch them up and tapping my fingers nervously against the arm of the couch. Before I had time to act on my impulse she opened the door and sat back down. Everything before and after the diagnosis seem a bit hazy, I remember my aunt asking several questions, and the psychologists reassuring me that this isn't a bad thing. The main thing that I remember is when the psychologist looked at me and said, "We have reason to believe that Cheyanne has Aspergers Syndrome".
I kept my promise and I didn't break, there was several times I wanted to bolt out of the room, but I stayed... frozen in my seat. The last thing I wanted was someone running after me trying to comfort me, I felt awkward crying in front of my family when my grandmother died. This, compared to that was a piece of cake.
I picked up Cheyanne from daycare, wrapped her in my arms, and told her how much I love her. It wasn't much but I took her to the park because of the incredible guilt I felt for all the spankings and all the yelling I had been doing lately.
There was a little girl trying to play with Cheyanne and she flat out told her she didn't want to play with her. Normally, it's the other way around. Either way it broke my heart. I knew she was always awkward with other children, but now there is a name to it, and it's not something she can exactly 'grow out of'. It will take months or years of therapy to maybe some day act 'normal' socially.
Three years ago I didn't know what autism was, now autism has completely taken over my life. I put three years ago because I first suspected she had autism when she was two and a half, but that's another story for a later date. I'm constantly on the computer doing research and trying to find every way to help her lead a 'normal' life. This definitely isn't the end, it's the beginning to something beautiful and amazing, I have never wanted to be a better mom than I have in this last week and that's exactly what I plan to do.
I was running late at work and ran out of the store with only five minutes to get to the psychologists office. The moment I ran into the office they immediately called me, my aunt, and my mom back into one of the offices. I had kept myself so busy that entire day I didn't have time to mentally prepare myself. I drew in a deep breath, sat on the couch in that small stuffy room, and promised myself I would not break in front of my family.
The psychologist, whose name for the life of me I can't remember, sat down with a stack of papers and started going over the reason we were there. I wanted to rip the papers out of her hand and read her diagnosis myself, we already knew why we were there was this really necessary? Then came the knock on the door, my head was spinning and I felt like I was in a soap opera, they were doing everything possible to delay the diagnosis. She left the room and the papers laid face down on the desk. I stared at them, debating whether or not I should snatch them up and tapping my fingers nervously against the arm of the couch. Before I had time to act on my impulse she opened the door and sat back down. Everything before and after the diagnosis seem a bit hazy, I remember my aunt asking several questions, and the psychologists reassuring me that this isn't a bad thing. The main thing that I remember is when the psychologist looked at me and said, "We have reason to believe that Cheyanne has Aspergers Syndrome".
I kept my promise and I didn't break, there was several times I wanted to bolt out of the room, but I stayed... frozen in my seat. The last thing I wanted was someone running after me trying to comfort me, I felt awkward crying in front of my family when my grandmother died. This, compared to that was a piece of cake.
I picked up Cheyanne from daycare, wrapped her in my arms, and told her how much I love her. It wasn't much but I took her to the park because of the incredible guilt I felt for all the spankings and all the yelling I had been doing lately.
There was a little girl trying to play with Cheyanne and she flat out told her she didn't want to play with her. Normally, it's the other way around. Either way it broke my heart. I knew she was always awkward with other children, but now there is a name to it, and it's not something she can exactly 'grow out of'. It will take months or years of therapy to maybe some day act 'normal' socially.
Three years ago I didn't know what autism was, now autism has completely taken over my life. I put three years ago because I first suspected she had autism when she was two and a half, but that's another story for a later date. I'm constantly on the computer doing research and trying to find every way to help her lead a 'normal' life. This definitely isn't the end, it's the beginning to something beautiful and amazing, I have never wanted to be a better mom than I have in this last week and that's exactly what I plan to do.
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