Group home project update #2

Here’s the latest update on the house project! Written on June 12th 2018

I know some people are wondering what’s going on with my group home so here’s an update! We have all decided that building a modular home is going to be are best option (really are only option) but that’s okay because we all have wanted to build a new house from the beginning! Helen the lady helping us with the project has also looked at several other ranch’s that are for sale to see if we could remodel an already existing house but they either have sunken living room or they are to small for are needs! We have finally got 3 different estimates from 3 different modular home builders so the next step is getting permission from the office for people with disabilities to bid it out who ever is the cheapest will get the job! Yes I know that going with the cheapest person isn’t always the best but that’s how the state works! Currently Helen is looking for land to build the house on so I’m not sure where the house is going to be yet! 

Group home project update #1

This post was written on February 2nd 2018! 

I wanted to update my friends about my house project! Unfortunately Tina was not approved to move with Cam Chris and I but it wasn’t a big surprise because we knew it was a possibility! The next step is house hunting or we may build the house! We will have another meeting soon I will update everyone when we have some more major developments!

Group home project!

I have decided to move all my group home related Facebook posts over here to my blog! This is the very post this was written in on December 13th 2017!

Well my mom and I have been working on a special project for almost two years and today my family got the best Christmas present ever! I am very excited to tell everyone that today I got approval for my self directed Certified resident (group home) so by this time next year I will be living with two awesome gentlemen and hopefully my friend Tina ( we haven’t gotten approval from the state to see if Tina can join us because she already lives in a different group home but I’m hoping that they say yes and let her move in with us)! Cam and Chris are wonderful people and I’m so glad I will get to live with them! All together there will be two guys and two girls! Although I’m very nervous I’m excited about this new chapter in my life!!

A story of true friendship!

Today I’m going to talk about my best friend in the whole world! I’m not going to use her actual name just to letter of her first name to protect her identity! Our friendship story began on February 4 2013 it was the beginning of the 3rd semester of our junior year of high school and we started working in are school bookstore together and she started talking to me like I was a normal girl not the feel sorry for you way that people had been talking to me before hand and I just knew in my heart there was something special about her by that Friday we were already close friends so we took our first picture together on her phone later that day she put the picture on Facebook with this caption (I've only known this girl for a little while but she's inspired me so much. She may not be physically strong at some points but she is the strongest person i know. I may be one of the few people who look past her disability but I encourage all of you out there to do the same. Look past what people look like on the outside and focus on what's really important. After all, it's what's on the inside that really counts.)! As the weeks went by our friendship grew stronger and while we were stocking the selves one day my aide had said that I should use my right hand because of my Cerebral Palsy I don’t have very good use of my right hand well S heard that and decided to make me use my right hand and thought it was funny so I did use my right hand not knowing that from then on she would make me use my right hand when stocking shelves together! Normally when people say use your right hand I get frustrated because it was extremely difficult for me but when S suggests that I use my right hand I did because it was funny to me and it made me smile oh and it was great OT for me so that was a plus! That year I had my first true birthday party with friends and it was a wonderful time with my friends especially S! By May of 2013 I had more friends and it was because S would be talking to me and hunging with me around the school so more people started looking past my wheelchair and seeing me for me not the girl in the wheelchair! In June we had our junior prom and was trying to find help for the night because I needed help in the restroom I had asked S in late May if she would help me and she said yes which honestly I was extremely surprised about but I was like ok great now I can go to prom with my date and my mom wouldn’t have to drive around all night just Incase I had to use the restroom well I ended getting spoken to by the school because apparently it’s not appropriate to ask your best friend to help you with certain things but they had a solution for me and that was my assistant principal had offer to help which I was fine with that I just wanted to be able to go to prom like everyone else and not have my mom have to be there I’m am in no way saying I don’t love my mom and yes I was grateful for that she’s being willing to help me but I was a teenager and I wanted to be like everyone else! The day of prom had come and I was having a amazing time so I had my assistant principal phone number and I was supposed to call her when I needed help in the restroom and I did but because she didn’t have mine she didn’t recognize my number so she didn’t answer so I was driving around looking for her when I went passed S’s table and she could tell by the look on my face there was something wrong so she asked me what was wrong and I told her and she said okay go to the restroom I’ll help you and I said are you sure because I had become very self conscious at that moment and I didn’t want her or I to get teased about something that she did something nice for me but not something a best friend usually has to do and she looked at me and said just go I don’t care what about what everyone else thinks! We had a great night together and with are wonderful dates as well! Then summer came along and she actually came over to hung out with me a first for me! Our senior year was a little different because are schedule did have us in the bookstore together anymore which I was very sad about because she was my my first friend who didn’t have a disability and I had become very close to her and not being able to work together every day was not fun but she made a conscious effort to come by the bookstore store when I was working to say hi and give me a hug because I love hugs! Now it’s January 2014 because my school did a combined junior senior prom and the end of the year in the beginning of the January my school does something called the senior dinner dance so the senior class can have something special just for them! Well that night came around and unfortunately I didn’t have a date but that’s okay anyway S and I were able to sit together which was awesome and when they served us dinner we had stake yum but I couldn’t cut it myself because I can’t use my hands together very well so I very quietly asked S if she would help me and of course she said yes! The rest of senior year was like normal and we would text all the time and see each other when we could she had a lot of advanced classes but she’s is very very smart! I had never even had a friend as wonderful as S so a lot of time I would get scared that she would just stopped being my friend because I get very attached to people that I like and it had happened to me before when I was in the 8th grade I was friends with this girl and all the sudden she stopped talking to me because she didn’t like how attached I got to her and she told me later on that the reason why she stopped being my friend was because I got to excited when I saw her and she said it was weird so because of that I was always afraid of it happening with S to so whenever I got scared I would send her certain texts and she would always reassure me that she was still my best friend and she wasn’t just going to stop being my friend! After we graduated from high school we stayed in touch by texting and FaceTime! Then she’s started college and we didn’t talk much anymore and whenever I would see pictures of her with her friends from college I got extremely jealous and even mad sometimes because they got to see her and I didn’t! One week she got very busy with school so she wasn’t answering my text messages and on a Wednesday afternoon at my day hab program I had started crying because she had posted a picture of her and this other friend she had my jealousy had came out really bad yes I cry when I’m mad and because she’s hadn’t texted me in a few days I let staff form my program get in my head and they had convinced me in a matter of 10 minuets or less that after graduating high school you loss touch with all your friends so that suggested that I unfriend her on all my social media accounts and deleted her phone number on of my phone that way I wasn’t getting upset anymore while I listen to them about the social media and unfriended her I couldn’t bring myself to delete her number so after going to bed that night and crying for hours because I was literally heartbroken that she didn’t want to be my friend anymore I couldn’t take it so I texted her something like I can’t do this not being your friend thing and because she didn’t know what happened earlier in the day she was very confused so she texted me back asking what I was talking about and I explain everything that happened and she was mad at my staff at program because they had told me all this crap! She then texted me saying that college was going to take up a lot of her time and that she’s posted people with these other people because that’s all she had the chance to hung out with and it wasn’t really hung out they were just in the same classes and worked at the same job and that of course she was still my best friend and to not let anyone convince me otherwise! I immediately felt better and was able to go to sleep! I had come to terms that she was still my best friend she was just really busy with school! Finally after about 5 months we were able to make plans to get together this was around Christmas time and I didn’t have anyone to drop me off at the mall so I didn’t know what we were going to do well without hesitation she’s just texted me and said we can just take her car and I was but I need help getting in and out of the car and she would have to lift my manual wheelchair in and out of her trunk and she texted me back yeah I know that and so what! On Friday morning December 19 2014 she came to pick me up and we went to the mall together! I’m only sharing the big events of our friendship with everyone so in between 2014 and the next story I’m going to tell we texted all the time and video chatted and she came over to my house to hung out and things! Oh yeah before I start telling these next few stories you know that anytime I have a medical issue throw out our friendship she always kept in touch with my mom or me! Okay now we are jumping forward to November of 2017 I had surgery and it was a big surgery so S wanted to be kept informed so just as my mom texted my family to tell them how my surgery went she also texted S so she would know because even though I usually do Facebook status updates to update all my family and friends at once because it just easier this surgery we all knew what going leave me a lot of pain for a few days or longer my texted the important people in my life and S was of course including in those texts I basically slept ate not much else because of the pain medication so no real Facebook updates from me! Although I got the go home the same day as surgery I ended up having some complications and ended up back in the hospital about a week after surgery so of course my mom kept S updated by my request so because I was in the hospital over the weekend S came to visit because I was doing Facebook updates by this time and so she knew I was having a rough time and so she came to cheer me up unfortunately I was having some terrible muscle spasms and pretty much cried and screamed a lot because of the pain! My awesome mom had been with me the entire day so when S and her mom came to visit me my mom took a much deserved break and while I felt absolutely terrible because I was crying and screaming so bad and kept trying to apologize to her she just told me not to worry about it and she just stood next to my hospital bed and let me squeeze her hand and she tried to make me smile she succeeded a few times! While most people would have left after a few minuets S and her mom stayed for almost an hour and S did her best to comfort me! Then in March of this year the medical device that deliverer medication directly to my spinal fluid I had implanted stopped working which put me in the hospital once again this time for fourteen days I couldn’t have the device replaced for 12 days and because withdrawal from this medication is extremely dangerous I had to stay in the hospital because they needed to keep a very close eye on me to watch for signs of withdrawal! I was not myself for the first 12 days because withdrawal from this medication is also terribly painful so I was on oral medication of the medication that normally delivered by my pump to keep me on of withdrawal I was also on very strong pain medication to mange the awful pain I was in because the pump didn’t work so obviously I wasn’t myself! One particular day I was feeling really down from being in the hospital for so long so my mom texted S and even though is was busy with school she took the time to FaceTime me and cheer me! I don’t remember if she was able to visit me in the hospital this time but I remember her FaceTime call really making me happy! 

Now that I have told you really just a snippet (yes I know this blog post in very long but it really is just the major events of our friendship)of how wonderful S is by telling what I consider some of the the biggest things that make her so special and why I called her my very best friend I’m going to tell you the lessons she has taught me throughout our friendship! She has taught me that I should be comfortable with who I am and if people don’t want to except me this way then they don’t need to be my friend! She has taught me that I am normal and that what most people would consider weird is what makes me unique and she doesn’t mind it and that my ture friends won’t mind either! She is still teaching me what a true friend really is! She has taught me that I shouldn’t be afraid to ask for help because she doesn’t mind helping me to her it’s just part of being my friend!She is also still trying to teach me that there is no reason to doubt her loyalty to our friendship and that I don’t need to asked her all the time why she is my friend although I still do ask her lot why she my friend I’m am trying to get better at  just knowing in my heart and mind she will always be here for me no matter what!  

That’s why February 4th will always be a very special day to me and S will forever have a very special place in my heart! 

I hope your able to find a friend like S one day and for my readers with disabilities there are people in the world that are willing to be your friend and very special friends will help you with whatever you need no questions asked!

Defective baclofen pump!

On the evening of March 1st I went to bed not feeling that good my spasticity was terrible but that’s happens when I’m very tired or a number of other things can make my spasticity worse! I woke up Friday morning and my spasticity was so bad I couldn’t use the restroom so we called my neurosurgeons office to ask what we should do and the answer was go to the emergency room luckily after some pain medication I was able to use the restroom (thank goodness that they didn’t have to catheter me because I was able to use the restroom on my own) that was the main reason for the emergency room visit is because I wasn’t able to use the restroom on my own! They admitted me to the hospital because it was determined that my baclofen pump wasn’t working for some reason and I was in the very early stage of baclofen withdrawal which can become very serious but luckily we caught it early enough I was at the hospital under going treatment before anything to serious happened to me! After many many days it was determined that my baclofen pump was defective and needed to be replaced which required me to under go another surgery my fifth surgery is less than a year! It’s been a rough few weeks but I’m finally on the road to recovery and feeling much better! This is the short version of what happened I was in the hospital for a total of 14DAYS! Any questions please feel free to ask! 

Thanks 

Cerebral palsy what is it you ask!

March is cerebral palsy awareness month so I thought I would write about it as I understand stand it! Yes I know it’s not March just yet on the day I’m posting this but March may become hectic so I wanted to write while I had the time!

Please remember I’m not a health care professional so I did the best I could at explaining everything!

Well cerebral palsy is brain damage either before,during or after birth The brain damage it self is caused by a lack of oxygen to the brain! Cerebral palsy is an umbrella term for a long list of movement disorders! The most common type of cerebral palsy is is spastic cerebral palsy! There are for main types of spastic cerebral palsy quadriplegic which effects all four limbs and some speech as well! The next type of spastic cerebral palsy is triplegia which typically 1 arm and both legs this the least common type of spastic cerebral palsy! The next type of spastic cerebral palsy is diplegic which mainly effects the legs! The last type of spastic cerebral palsy is hemiplegic which effects one arm and one leg on the same side of the body usually.There are many more types of cerebral palsy but it would take my hours to research and write them all down that why I did the four main types of spastic cerebral palsy and because spastic cerebral palsy is the most common type! Now you’re probably thinking what is spastic cerebral palsy the main characteristic of spastic cerebral palsy is spasticity (high muscle tone!) Spasticity makes it hard to control the movement of your body so everyday tasks are ten times harder because you have to not only focus on what you are doing but you also have to focus on making sure the limb is are using is doing what you need it to do to complete the task! No one really knows what caused spasticity in cerebral palsy it is thought that the brain sends out to many signals to contract the muscles and not enough signals to relax the muscles! I like to compare cerebral palsy to a snow flake because it effects everyone differently you can see two different people with the same kind of cerebral palsy but it will effect both individuals different for example they might both have spastic diplegic but one can use a walker for mobility but the other person uses a wheelchair for mobility! Cerebral palsy doesn’t mean people don’t know things so please don’t treat people with cerebral palsy like a two year old cerebral palsy effects our movements not our intelligence! Another thing is don’t just assume we can’t do something and do it for us please ask or if you see someone struggling with something let them ask for help don’t just do it for them! I’ll give you a tip the way someone with cerebral palsy does something may look odd but we learn to adapt because of our physical limitations and we get it done in a way that works for us! There are many other medical conditions that can go along with cerebral palsy and many treatments options but I’m not a health care professional and I don’t want to to give people wrong information so if you have medical questions please take to your doctor or other health care professional! If you have any ideas for what you would you want me to right about next or any questions of how cerebral palsy affects me personally please let me know!

The things I don’t tell people!

I always try and stay positive and say I don’t mind having Cerebral palsy but you know what sometimes I really Hate having CP! I don’t like to have to explain to everyone that I’m normal but different you ways you can see and post importantly ways you CANNOT see! Please always think I don’t like to have to sit a chair truth is I don’t mind my wheelchair I actually love my wheelchair the stuff I don’t like not being able to go out with friends! Having to doubt if people who say they like me but really just say that because they feel bad for me or they are my friend because it’s makes them look good! I hate having to make plans months in advance to hug out with my two best friends when I know that they have friends who call them up and ask them if they want to go out and they say yes see you a couple hours! I hate having to worry about weather there friends know about me or I’m I the well kept secret friend who they don’t talk about so they don’t get teased or judged because their friends with the girl in a wheelchair! I hate having to only go out for a few hours because they have to study but in reality they just want to go hung out with their friends they aren’t any work! I hate to have to take other people with my friends to mall because I can’t help get myself in and in and out of a suv or a truck! I hate that my moms has to drop me off to hung out when I need my power wheelchair for independence and because it’s more comfortable! You want to know what I really want I want to go out and party with my friends just like every other 22 amount 23 girls does I want to have a true sleepover at someone’s else’s house not a family member house! I don’t always want to be told that I’m fine just the way I am because in reality sometimes I really dislike the person I am! Please don’t tell me I’m like everyone my age (normal) because I’m NOT! I hate having to wonder everyone night before I go to sleep if I’ll still have friends in the morning! I hate that people tell me stories when I text them for example I’m studying or hunging will my family when they are really hunging out with friends and don’t want me to bother them! I mainly wrote this post for people (friends to know how I really feel about things) This post may have surprise you but please know I’m not oblivious and trying to fool me with different things don’t work at it’s my heart so very bad!

Do not leave judgmental or mad comments because I will delete them and report them!