My Friend Has Autism

Everything about today was off-putting; I was informed I owe two different bills to Cheyanne's therapist totaling a little over $700, the store right next to my work was robbed at gun point while I was at work, and once again I've been let down by Cheyanne's school. Thankfully, no one was hurt in the robbery and the bill I owe should be covered by insurance once I get all the paperwork in.



It's only the second week of first grade and Cheyanne has already been picked on by a few kids. If you know me at all, you know I'm not one of those mothers who believes there child is an angel and has never done anything wrong to anyone else... so I'm not pointing the blame completely on the other kids. However, kids can be ugly to others with disabilities whether it's severe or not. So, like any mother would I want to do whatever I can to shield her from pain. I found a few children's books online that discuss the topic of autism, obviously it doesn't go into great detail about autism but it brings awareness to children that everyones different and that's okay. I e-mailed her teacher and asked if she would allow me 15-20 minutes of her class to read one or two of the books. I have realistic expectations... I don't expect every child to understand nor to even listen, but if just one child were to listen, to understand, to show compassion to another child that was 'differen't' from them... then it would be worth it. What if that one child were to become best friends with Cheyanne? 

Her teacher seemed to be onboard and asked me to send the books to school with her and we'd set up a conference to discuss all the details. It was such a relief to get that response. Then, today I received an e-mail saying she had shown the books to the principal and she said they weren't age appropriate. I'm not even sure how many times I have opened my inbox to re-read that e-mail to hopefully have misread it. I've tried looking at it from a different perspective but I can't possibly understand how this can be viewed as something inappropriate. I'm not expecting to go into her class room and have a lecture about autism, I'm reading a children's book... and bringing puzzle shaped cookies. Who doesn't like cookies?! I've been on amazon and the age level for one of the books is Kindergarten and above, all the reviews raved about how it's a great learning tool in a classroom. It only leaves me to believe it's personal, the beginning of Kindergarten last year started out rough. I've given the school a second chance... but I think they may be on their second strike soon. 



Today has been a complete let down, hopefully once I get to speak to the principal face to face and express my concerns I can change her mind.

Light bulb

Too often I catch myself fantasizing over materialistic things. Whether it be decor for my house, new photography equipment, clothes, furniture, electronics, stuff for Cheyanne, a new house.. the list could go on for ever. It's been proven several times that the fulfillment I feel only lasts momentarily. Unfortunately, that cycle may never end.

However, tonight I was reminded that if I had everything I ever wanted it wouldn't come close to how I feel when I have special moments with Cheyanne. Months ago when I would sit down with her and try to work with her on either reading or writing the majority of the time within minutes her head would be on the table and she'd be screaming "I can't do it, I can't do it, it's too hard!". 

I remember walking into her daycare and passing through the cafeteria when a little boy asked me to help him with his math. The boy was about Cheyanne's age and the moment I pointed out his mistake it was as if a light when off in his head. I wanted more than anything to see that in Cheyanne, to see the excitement in her eyes when she figured out a problem she didn't understand. I felt guilty for every feeling I had while helping him. 

Tonight while cooking dinner I finally pulled out the math book that her teacher sent home for her to do during summer break. It was as if I was working with a completely different child! She did five pages front and back, several addition problems on her own. Her excitement from solving a problem was overwhelming. I am so proud of how far this girl has come.

Helpless

The last few weeks have been rough, we've had our good days but the majority of them have left me feeling helpless.

On October 20th my mom, Abby, Kels, me, and Cheyanne all woke up at the crack of dawn to go walk for breast cancer. I've been wanting to attend the walk for years and this year I finally did it, it's the least I can do for Kathy. After walking around and missing the walk we were supposed to be in we hurried to the Autism Speaks Walk. We showed our faces, my mom raised money... I guess that's better than nothing? Next year I'm sure we'll be better prepared. 

Manda showed up later on to walk with us, it was such a great experience. I'm so happy I have these wonderful people in my life to help support Cheyannie. Cheyanne had a minor meltdown and had a few random outbursts, it was pretty awesome having no one stare or gawk at us. They had several resources there, it was comforting to see how many people were out there that could understand our struggle. 

A few days later I discovered we had bed bugs. I've been living in this apartment for two months and the apartment manager of course blames them on Cheyanne, saying she must have picked them up from school. It was definitely a bump in the road that I was not ready for, financially or emotionally. I threw out both of our beds and we stayed at my parents for a week, we're finally back home but I've woke up two nights itching immensely. I hate borrowing money from my family, but I hate bugs even more. The anxiety attacks caused by the lack of sleep those few nights and everything else had me extremely sensitive and I'm sure made everyone else think I was losing it. 

The day after I found out we were infested with bed bugs was the ARD meeting at Cheyanne's school. The whole meeting was not what I expected and left Kathy and I baffled by what they had to say. She was on track with everyone else in her class, she had no behavioral problems, performs in group activities, social with all her peers, and lastly... she is viewed as a leader. As much as I'd love all of these to be true, I don't believe it. Apparently, no one there sees any signs of autism so all they have decided to offer her is speech (possibly after testing) and a tutor to come in during class if she needs extra help. Needless to say, I was beyond frustrated and hurt that they would dismiss everything I had to say. A few days later I get a call from an ABA therapist that lets me know my insurance doesn't cover the therapy she needs. That's when my meltdowns began. That's when I learned how to be an advocate for my daughter, as chaotic life has been lately I'm not going to stop fighting for her. I've found an advocate to come to the next ARD meeting that will speak for Cheyanne, I'm supposed to meet with her in a week and a half. Finding her has made me so much more hopeful that Cheyanne will get all the services she deserves. I've found a tutor, who was also diagnosed with Aspergers, to come help Cheyanne with her reading and writing. 

Have to get ready for our meeting at work, to be continued........... :)

Advocate

"You are your child's advocate."

"Be an advocate for your child." 


I hear this constantly screaming in my head throughout most days. I've heard this from every autistic parent I have met this past month and it's absolutely terrifying. After having Cheyanne it was hard enough knowing the fate of this innocent, beautiful baby was left solely in my hands. Now, it's different. Becoming a mother was natural, being a parent to a special needs child is not. It's not something that is a part of you, that emerges the moment that little bundle is placed into your arms the very first time. In my case, the moment the nurse laid her down on my stomach and with her eyes still shut tight, her little hand blindly reached out and grabbed my hand. 

Of course hearing the news that she is autistic has changed me, but it's not something I could ever prepare myself for. I look back this past month and I feel like I've wasted so much time, the worst part of this all is I have no idea what being an advocate is. Of course, I know what the definition is but I don't know how to be an advocate for her. I spent many hours on the internet researching autism, I've been to the book stores and purchased as many books as I can afford that has anything to do with autism, enrolled her in Girl Scouts to help her social skills, I've applied for Social Security to help with therapies, and I finally have an ARD meeting that's scheduled for tomorrow that I may or not be able to attend because not only is Cheyanne sick but I may not be able to get time away from work. I don't feel like it's enough, there are days like today that I feel like I'm failing, but I don't know what else I can do. I need to do more. 

I know I am there for her in every way physically possible, but it's pathetic how emotionally unavailable I am to her some days. It's a constant battle and there are so many days I hate myself for it. She is already one parent short, I can't keep doing this to her. This is not the parent I wanted to become or the parent I dreamed of being while carrying her for those nine months. She deserves so much better. 


I'm feeling cynical today. Maybe it's due to Cheyanne being sick and I'm feeling completely helpless. I hate seeing her so sick. 

Red light, Green light.

I've had a stream of emotions running through me the entire day. As I climbed in bed this morning with Cheyanne she crawled in next to me, wrapped her arms around me, and whispered "I love you". It melted my heart and instantly made me grateful for her diagnosis. The more I read into Autism, as much as I hate that she has to endure all of this, I know this could be much, much worse. Some of these children are mute and have extreme anxiety by a simple touch. I'd be lost without her hugs, kisses, and 'I love you's'. 

Today was her second week of Girl Scouts and it doesn't look like it's getting much easier. I did just as the therapist said and told her where we were going and what to expect. The moment we got there she climbed into my lap, wrapped her arms around me, and buried her head into my chest. I asked her if she was scared, she shook her head yes, began whimpering and telling me she wanted to go home. She stayed secure by my side the entire hour. At one point they went outside to play 'red light, green light', and I had high hopes that she would feel more comfortable playing outside with all the other kids. Instead she sat down on the steps next me, folded her arms, and screamed "I don't want to play!". I put my stuff down and told her I'd go play with the other kids, trying to show her there was nothing to be afraid of. She finally got the hint after a few rounds and came to stand beside me, but before I knew it she was sitting on the ground playing with the grass. I explained to her the rules of the game once more and as soon as the little girl screamed 'green' she proceeded to crawl next to all of us. My heart broke. The moment girl scouts was released she ran outside to the playground next to the church and began playing with all the other kids like they were best friends. Once again I am completely dumb founded by the way her brain works. 

On the ride home I heard her reenacting the night like she often does, "red light, green light, red liight!!".

"Honey, do you like red light, green light?" 

"I do mommy, I do like red light, green light!" 

My body ached, I knew she wanted to play, but for reasons I have still yet to figure out she couldn't. There were so many people there tonight and I felt how alone we truly were. I felt so disconnected to all the other parents there, I can't fathom the disconnect Cheyanne feels.

If there was anyway I could make this easier for her I'd do it in a heartbeat.  



I've honestly been trying extremely hard not to feel sorry for myself, and when I do it's an even bigger struggle to not complain to friends and family. That's one of the biggest reasons I decided to start this blog, it's their own prerogative if they want to come here and listen to me complain. Then there is days like today, I'm sitting in this girl scout meeting bored to tears wishing I was at her softball game, dance recital, or cheerleading practice. In no way am I saying that she's not capable of doing any of those, but there is a chance that she won't. She has very poor balance, awkward gait, and terrible eye contact. Of course there is therapy that will help, but it may not be enough. I will never, ever put a limit on her capabilities or stop fighting for her but I hate thinking this may not be a part of her future. 

This could all be me being selfish and wanting to relive my childhood. I used to love going to softball games, my own and to watch my brother play. For years I've been impatient and excited to attend her extra curricular activities and all I have is to sit through a dull Girl Scout meeting. That's not exactly what I've been looking forward to these past few years. Even her school plays, do I need to come with the expectation of her lying on the ground and shutting the entire world off like she has done in the past? 

Then there is the games, and this ridiculous disappointment I feel rushing over me when I think about the stacks of board games I have collected over the years for her. I have such fond memories of sitting around the kitchen table and playing board games and cards for hours on end. The older I got the more I fantasized about gathering around the kitchen table for Friday game nights with my little family. There is so much missing from that picture, one of the biggest pieces being her father. Cheyanne is not dumb by any means, but instead of playing by the rules she'd rather make up her own rules. That and she's bored within five minutes, I thought it was just her age and for all I know it could be... but I'm not counting on that much anymore. She may not be one of those board gaming people, I'll just have to suck it up and get over it like I'm trying to do with everything else. 

I hear it, I sound like a awful mother, here I am mourning a part of my daughter that I want so deeply instead of being grateful for what I do have. I'm not embarrassed by her, nor am I disappointed in her, and I definitely don't love her any less. I don't know how to put it any other way except I'm grieving the future that I envisioned for us, she's still the exact same person she was before the diagnosis but the things I thought she would grow out of now have a possibility that she never will. 


At the end of the day if there is only one thing that I'm sure of... is that Cheyanne is the best thing that has ever happened to me. Whatever happens in the future I can deal with and get over as long as I have the hugs, kisses, and the "I love you's". 

Just another day.

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. 

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.