Priorities

It's amazing how stuff has been falling together lately. Cheyanne was going through a hard time at school a few weeks ago and I made the toughest decision and decided to quit my job. I knew it sounded completely irrational and possibly even a little irresponsible to some but the only thing that I can think of on a daily basis is how much Cheyanne needs me so much more than I can give her. I decided I'd talk to my family about it; tell them my concerns, my fears, my hopes that will come out of the situation and they'd knock some sense into me and tell me how there's no way I could afford my rent, bills, and everything else. Surprisingly, they will all very supportive (give or take one)... but that's when I realized I could actually do this. So, that's when I decided I'd talk to my boss. I told her that I'd be quitting at the end of March (this was the very end of February when I spoke with her), she then reminded me that T-mobile had gave each employee an investment in stock and if I waited till June I could cash out on it. It wasn't a small amount of money, so I figured a few more months wouldn't be terrible and I could save up a little more money. 

Then, just a few days later my boss told me that they are opening up a new position at every T-mobile store and if I was willing to stay I could have it. It's 20 hours a week, no evenings, and no weekends. I'd be in charge of inventory, paperwork, basically all the stuff that is handled in the back, and absolutely no sales. This position literally fell in my lap and is exactly what I've been looking for! I've never been one to stay at home too long, I quit my job a few years back and two months later I was begging for anyone to hire me. So I keep my job, my sanity, have a little bit of income coming in, and I keep all my benefits. I've never really liked the idea of government assistance, but it's time that my pride gets put aside and I do what is important for my daughter. So, beginning April 1st I'll be applying for social security, food stamps, and whatever else to keep me and Cheyanne afloat. I already have plans to get my photography up and running again, I can't believe I'm actually doing this! This is the first job I've ever had that will exclude all evenings and weekends. Cheyanne and I can do whatever we want! :) 

I'm in the process of coming up with an eight week summer school course to help Cheyannie prepare for 2nd grade, along with that I'm hoping to come up with a summer bucket list. It can't be all work with out a little bit of play! As much as I hate to take away a part of her summer and make her do school work, I know she needs a little extra push and it will be the best thing for her. I may consider inviting one of her friends over a few days out of the week and they can join in on the learning, they may actually have some fun doing it! I've bought folders, cards, maps, games, and have came up with a thousand different activities thanks to pinterest. Now the real fun is actually putting it all together, I need some teachers that are good with organization!

I rarely post on here anymore so if my non-existent readers don't know, I'm applying to the OTA (Occupational Therapy Assistant) Program. If I'm accepted I should know by May-June ish. Since my Anatomy grade wasn't great, and I got my Hep B shot in a little later than expected I'm not counting on getting accepted. I'm not too sure, but I think during the meeting they said it was mandatory to have two out of the three shots in the series to be done by the time of the application. I've only had one and I have to wait two months to get my second shot. Getting finished with school is a HUGE priority of mine, but unfortunately my priorities are never in order and I tend to jump around all over the place. For now, my focus is Cheyanne. I'm not completely hopeless though, I'm hoping there is one last miracle in store for me. If not, I'm satisfied with my work miracle ;). 


Lastly, I know I've said this before. I'm sure 100 times. No, make that 1,000. The ONLY way for me to help Cheyanne, to finish school, to stay happy, to give us both the life we deserve is to 'fix' myself. I'm constantly tired, make that exhausted and I'm rarely happy anymore. I've seen myself in the mirror when I'm angry with Cheyanne, I've regretted instantly losing my temper with her, and I know it all boils down to how unhealthy I am. I've thought about it for months and before I had the chance to change my mind I told one of my friends to order me the 24 day challenge for advocare. I don't plan on wearing jeans or yoga pants this summer! My brother and sister in law bought equipment for their garage and they have a mini gym, looks like I'll be hanging with my nephew quite a bit these next few weeks! Once it starts I'm hoping to post once a day about the challenge, I'll keep you posted!

Reading Bingo

I have a love/hate relationship with pinterest lately. I saw this pin at the beginning of the summer last year and I could never figure out how to get the free download, so a few months later I tweaked it and created a winter theme. Cheyanne has been struggling with reading and math in school this last semester and I'm determined to get her grades back up to a B. Each story she reads she has to fill out a banner and put it back on the wall, hopefully this will keep her determined to fill them all up. 

Once she gets a bingo she gets a prize. I promise I didn't have her write "I will feed the fish". She did that all on her own even after I told her that wasn't much of a reward. Looks like I get off easy on that one ;).

I love listening to my girl read, I can't wait to see the progress she makes!

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".