Chronic illness, Chronic Pain, Chronicillness, disabilities, disabled, Disableds, Friends, Friendships, KyphoScoliosis, Kyphosis, Life, marfan Syndrome, MarfanSyndrome, medical, Physical Disabilities, rare disabilities, rareDisabilities, Scoliosis, Spoonie, Spoonies, UnBreakable, Uncategorized, Zebra, Zebras

When my Bestie visited…Pure Joy!

The month of January 2023 was definitely a good one aside from the usual pain that I always experience during the cold months; my bestie and her little family (husband and daughter) came in for a month to visit. Her husband is in the service and they are currently in Italy. Her little girl is about 3 years old, and we just found out this week that they are expecting baby #2- hoping for a boy so that the dad wont be in “estrogen hell” lol.

Anyway, we spent 2 visits together while she was in, as they also had to visit between his family and her family. The first visit we took her little girl to Childrens Museum, a place that I enjoyed as a child and still enjoy and constantly look for an excuse to go back. Her little girl had me in fits of laughter, she definitely has her mommy’s personality- she called me a little girl and also had told her mom, “Damie ma fren now mama” lol.

The second time we just hung around the house and played pretend with my old tea party/kitchen stuff from when i was a kid. We also played doctor with “Aves” doctor kit. She kept making us “throw up the icky medicine” she gave us. It was funny.

I enjoyed my visit with them and was sad when they had to leave to go back to Italy and wont see them for a year, but I know a year will fly by rather quickly and next time we will have a new little baby to love on too.

But even still, I miss those old times when my bestie and I were younger in high school or fresh out of high school and being silly and cutting up, but thats life, we grow up and have to adult at times. Even though we are miles apart or dont talk every day, if I need, I know my bestie always has my back, and I will always have her and her family’s ❤ I love her ❤

Chronic illness, Chronic Pain, Chronicillness, disabilities, disabled, Disableds, KyphoScoliosis, Kyphosis, Life, marfan Syndrome, MarfanSyndrome, medical, Physical Disabilities, rare disabilities, rareDisabilities, Scoliosis, Social Disabilities, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, Uncategorized, Zebra, Zebras

Goodbye 2022, Hello 2023

As the year 2022 closes and the year 2023 opens, I wanted to go over and recap my year; How I’ve grown and flourished, even though it didn’t really start until May, I have opened myself up to new dreams, possibilities, and opportunities. I have also made many new friends and aquaintences.

Even though I continue to have massive stage fright and social anxiety in large crowds, I have started public speaking and helping out for or at events for 2 really amazing organizations/programs: Guns Down Power Up- Founder Eric Williams, and #The BullyBox A passion Project- Founder Shauna Sias: Through these programs and events, people I’ve met and talked to, have inspired new ideas, passions, inspirations, and possible opportunities to “open doors” to achieve my dreams!

In other news, I also been doing some projects on my cricut- I am still learning new things about it, and if I could just ignore the pain to focus, I could do alot more crafting and creating. It is just so hard to get myself distracted from the pain and focus on crafting. the pain is in the back of my mind nagging when I try to fight through the pain sometimes..it is annoying. I also went to my first Comic con in October and had a blast and now I am hooked! I am going to the next one in March and may even cosplay this time!

My cat, Taz, that I been having since April 2006 – 9th grade- passed away. He was almost 17 years old. We been through alot, me and him. He was still very spry until the last week or 2 of his life. He started hiding out in garage, which he always like the garage, but the day before we decided to go put him down, he was having a hard time laying down and was breathing hard. Turns out he had some kind of respiratory thing, that even if he would’ve been young when he got it and had it been detected early, he still wouldve struggled as it is uncurable. He had a long, healthy, happy life, and now, he is up in Cat-Heaven living in God’s palace. Love you, Taz-a-roo, and will miss you, even though you stressed us at times!

My godchild is getting older and breaking my heart (haha just kidding). I cannot believe he is 14 already. I also cannot believe that David’s oldest niece, “skybaby” is gonna be a teenager in April! I still remember meeting her for the first time when she was still 7! and now she has 2 younger sisters who I also adore like crazy.

My bestie is coming in from Italy sometime this month, I cannot wait to spend time with her! I missed her like crazy. I miss our fun high school shenanigans and craziness, but then she wouldn’t be married to her husband or have her beautiful little girl who I am also crazy about. I cannot wait to spend as much time as we possibly can while she is in.

I cannot wait to see what fantastic adventures God has in store for me in 2023. Here is to good vibes and hoping I continue to discover more about myself and flourish into the person God wants me to be. Only through his grace and will…Amen.

Happy New Year, Everyone!

Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, drs, Handicap, Handicapped, Handicaps, Health, illness, Independence, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, marfan Syndrome, MarfanSyndrome, medical, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, Public Speaking, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, Talent, UnBreakable, Uncategorized, wellness, Zebra, Zebras

Update: the latest and somewhat greatest in my life…

Okay, so the last post I did was about Fortitude and public speaking events and such.
well, right before my Guns Down Power Up event, I managed to hurt my ankle- It was so swollen and hurt bad. Not broken though thankfully. The diagnosis eventually was “Soft Tissue Swelling” because i had fell on it when my legs gave out (my disabilities make my legs give out sometimes.) Anyway, I ended up going to the event in my wheelchair and NO SHOES because my ankle was so swollen i couldnt get shoes on. The event went fine, we didn’t have many turn out- but the ones who did seemed to understand my talk. I enjoyed learning more about Eric and his story too.

I also been helping #BullyBox and Ms. Shauna and them with promoting their events, making flyers, making stickers on my cricut for them, going to events I can and talking to the kids about disabilities and bullying. In addition to that, I been helping Eric with Guns Down Power Up program, promoting his events and making flyers for him, as well as helping him edit the book he is writing, stuff like that. Just doing what I can with my limited mobility and pain, to help these 2 amazing programs help with the youth of my hometown that I love and care about so deeply. Aside from that, I also do some creative projects on my cricut- iron on shirts, iron on wallets that mom makes, greeting cards, stuff like that- I am still learning new tricks on the machine. I also enjoy creative writing and occassionally “tweaking”/editing my book about my life with disabilities or writing new poetry (when I don’t have “dry spells” in my creative writing).

In September, I went to St Louis, Missouri, for my yearly spine check up. It was a new doctor as my last doctor moved back to San Diego, *Sad face* (why is it, every 3 years the orthopedics in St Louis decide to move on and that ends up shuffling me down the line to the next doctor to try to solve the medical rubix cube that is my life?). Anyway, this doctor says my rods in my spine look stable, they haven’t moved even though one is broken- it is stabilized by a different rod or some other medical mumbo jumbo i dont understand; Long story short, the rods look fine and I don’t need to go every year now- my next appointment is in 3 years, if no problems arise (and if this doctor doesn’t decide to move also.) I sadly did not have time to visit with my “St Louis Peeps” as they were busy and we were only there for a day.

We sadly did not have time this year to put up our halloween/fall decorations, but definitely will for Christmas. Hopefully we put up my Christmas Village pieces. It brings me so much joy to look at and rearrange. I definitely cannot wait for Mom’s homemade gingerbread cookies! YUM!

Anyway, that is basically it, Pain but trying to push through when I can. I mostly do alot from the computer or my phone. I do try to make events, even if it means begging someone to pack me in my wheelchair and bring me- which I HATE! I miss less pain and being more independent, being able to drive more than I am now. Yes, I am angry and Mad that this is my life now, slowly losing more and more of my independence with each year; having to live on pain medication just to get through the day, insomnia because of pain and not getting comfortable in bed, oh the list could go on and on…. but tis life, I cannot change it, so I might as well just try to accept and adapt..even if its hard!

ADA, Adult, adulthood, Adulting, Advocacy, AntiBullying, AntiHate, AntiViolence, anxiety, Autobiography, Back Pain, BackPain, Bullying, Career, Careers, Children, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Confidence, Connective Tissue, ConnectiveTissue, creative writing, Creativity, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, dreams, Emotions, Facing Fears, Family, Fortitude, future, Halo Traction, HaloTraction, Handicap, Handicapped, Handicaps, Happiness, heroes, hospitals, Humanity, Humans, IDEA, IEPs, illness, Independence, Inspiration, inspirational, Jobs, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Leadership Communication, Life, Louisiana, marfan Syndrome, MarfanSyndrome, medical, memoir, Motivational Speaking, Originality, Pain, Pain Doctors, Pain management, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, poems, poetry, Public Speaking, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Respiratory, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, StageFright, story time, storytime, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, teenager, teens, Traumatic Childhood, UnBreakable, Uncategorized, writing, Youtube, youtube videos, youtubers, Zebra, Zebras

Fortitude and what it means in my life

over the last couple of years,
I use the word fortitude a lot. I will tell yall why:

Back in 2017 I had subbed for my mom’s CCD class and they were learning about the virtues and the one for that week was fortitude- doing it in fear. It was my first time doing the CCD class by myself so I was nervous- nervous the kids would try to take advantage or not-take me seriously. Which it went fine.

The next day– I had been on an online dating site and got a message from someone who would now be my fiance. asking to go on a date. Again, I was nervous and scared. But again Mom reminded me of the virtue of fortitude -doing it in fear. (and yes we did go on a date, public – La Hacienda.)

So now anytime I do something outside my comfort zone and I’m nervous as heck–what word rings in my mind. Fortitude. And if it doesn’t on its own, Mom is right there to remind me of the word.

The latest thing I have had to do with fortitude is I started public speaking. Now don’t get me wrong, there have been times I have had to public speak before learning about fortitude. Even though I was nervous about it, opportunities continually pop up as if it is like God saying “HELLO THIS IS WHAT I WANT YOU TO DO.”

In the past, before learning about fortitude, I would still do the things but I didn’t know what “doing it in fear and nervous” was as far as virtues, and after the events I did, I never pursued or looked at public speaking as a career, further.


The first time I ever did any type of public speaking was in college for my Communications class- I made C’s because of nerves and read off my cards too much.

The next time was when I was asked to do what’s called “familiarity visits” with patients coming into Shriners for Halo traction- while I was in halo traction. Familiarity visits are telling the incoming patient what to expect: pain-wise, the routine during the week, how to do “pin care,” etc. That was easy because it was just like chit-chatting with peers; was I still nervous? yes! I worried I’d forget something important to mention or something, but still, I did it.

Another public speaking opportunity while in Shriners hospital during the time I was in halo traction was when the Respiratory Department Director asked the different patients to come to say a few words at the conference about how Shriners Hospital, the Halo traction, and especially the respiratory department affected us and helped us. I was nervous and with no filter, I told everyone there about my first weeks in traction and how I compared the respiratory department director to “Hitler of Respiratory” and the consequences once word had gotten back to her about me saying that! I had the entire room in giggle fits. The director and I may have had a rough start, but now we are best buds, and it’s our inside joke now.

In 2013, one summer while my godson was down from Texas, I happened to be wearing a tank top and he saw my scar sticking out from under my straps; he then proceeded to play “20 million questions” and I answered most of them until I got tired of answering and said “okay, that’s enough. go play, you’re giving nanny a headache!”

In 2015, one of my cousins at 4 years old noticed my spine sticking out during family Christmas eve and he was sitting behind me. I feel him feeling at my spine that was sticking out (The hump) and then suddenly feel him starting to punch it. His mom freaks out “_ Don’t hit jamie!” to which baby boy replied tearfully “I’m trying to push her back back in!” So that Christmas, he got the gift of learning about Scoliosis and why “cousin Jamie’s back sticks out.”

Also in 2015, I “tested the waters” of my comfort zone when LSU-Eunice hosted a talent show, where I read an original poem titled “Don’t judge by disabilities” and got a standing ovation as well as many compliments in the halls the following week. I was so proud that I had conquered my stage fright and even placed 3rd, which I don’t blame them poetry is nice, but music always wins!

Years passed and in 2021, I was a guest blogger on someone I only know online @Ami Ireland who has a blog “Undercover Superheroes” and talked about my disabilities there and it was posted in May 2021.

Now we are in 2022, and more opportunities have popped up without even really trying to get them. In March, I went to a church function and the CCD director’s granddaughter who I taught in kindergarten for VBS had finally noticed my back and how I was shorter than many adults, and she asked questions, so I explained as best I could at a 2nd-grade level and showed her pictures, she was shocked and just hugged me “Miss Jamie I had no idea. I remember you were always smiling for VBS and you spoiled our class!”

Next came when I was talking with Guns down Power up founder and director, Eric Williams. He had mentioned he was in special ed and had mental problems or something and I messaged asking if he minded talking about what disabilities/ why he was in sp-ed. I told him I had physical disabilities, and thus he asked if I minded coming to talk about my disabilities at his program. Which will take place on May 28, 2022, at Opelousas Police Department from 11 a.m.- 3 p.m.

From there, I was just talking to another program founder, the founder of BullyBox A passion Project to combat bullying in schools and such, Ms. Shauna Sias and she asked me to go on her and her co-host Nina Irving Williams Podcast/Live TV Livestream thing on Weds nights (Which Mine was April 13- I attached my segment of the show on my Youtube.)

So God keeps giving me Opportunities and in the past, it was just “one and done” but lately they have been more frequent, so maybe it’s time to come out of the shadows and do this more. These opportunities could open more doors as I have lots of passions and ideas but don’t know who to talk to or how to implement them. Who knows what God has in store around the corner for me?

God is good all the time. Sometimes we got to practice fortitude- doing it in fear!

ableism, Ableist, accomplishments, ADA, Adult, adulthood, Adulting, Advocacy, anxiety, Back Pain, BackPain, Brain Fog, BrainFog, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Confidence, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, Discrimination, diseases, disorder, disorders, dreams, Fall, Fall Semester, Handicap, Handicapped, Handicaps, Independence, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Leadership Communication, Life, Life skills, Louisiana, marfan Syndrome, MarfanSyndrome, Motivational, online courses, Pain, Pain management, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, support, Syndromes, Talent, UnBreakable, Uncategorized, Zebra, Zebras

Life update: Passed my College Class of Leadership Communication!

I am not sure if I put on here that I was taking an online class for the Fall 2021 semester at UL Lafayette. (originally I had planned to take 3 classes= 9 credit hours, but I decided to only do one class, as the others were on campus and I didnt have the energy or stamina to go on campus, so I just stuck with the online class= Leadership communication). I decided to take Leadership Communication thinking I would learn how to speak like a leader; Instead it was reading news articles and writing case studies, and learning different leadership styles; which can be helpful too I guess.

I was disappointed at first that it wasn’t what I expected, but I still tried my absolute hardest in it. In fact for my first case study, I didn’t understand the directions and was overly anxious about it: constantly emailing my professor and asking “is this right? am I on the right track?” Eventually they told me “you are doing fine, stop doubting yourself so much!”

For the end of the semester, we had an extra credit assignment where we studied 2 cases of Hate crimes against People of color (blacks) and against Asians in regards to Covid pandemic. I emailed my professor, asking if I could also include hate crimes against disabilities, they emailed back “While thats a great idea, I’d prefer we stick with the ones I assigned, but thats a great idea to include for my future classes. Thank you for bringing awareness.” I felt extra proud in that moment.

I managed to make A’s on every assignment. I made an A average through the entire semester! something I had never ever ever done in my history of college (maintain straight A’s through the course, sure I had occasional A’s in some assignments and my end grade was sometimes A’s, but never maintained/constant through the entire course!)

So apparently, I need to go into Communication! LOL. Im just so proud of this accomplishment!

ADA, Adulting, Advocacy, AntiBullying, AntiHate, AntiViolence, Camps, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Fun, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, hospitals, IDEA, IEPs, Independence, KyphoScoliosis, Kyphosis, Learning Disabilities, Life skills, marfan Syndrome, MarfanSyndrome, Mental Disabilities, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Social Disabilities, Social Disorders, Special Needs, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, Summer Camps, summer fun, SummerFun, Zebra, Zebras

Life Update: Summer Special Needs/Inclusion Camp Proposal Idea

 This is a future endeavor for me once I graduate with my bachelors degree. For as long as I can remember, I have been passionate about special needs and disabilities, probably because It is what I know. At age 11, I started attending a Summer day-camp for special needs called Camp We Can Do. (I have previously mentioned my experiences at Camp we Can do- See older blog post titled: “Disability Journey: Camp We Can Do- My heaven on Earth!!” It was a great experience back in the day, but sadly it has become basically “a joke” and not what it once was. However, it has influenced me and was a huge part of what made me into what I am today. I decided to take the things I liked/loved about camp, the things I wanted to change, my ideas I’d often proposed to staff while as a camper, etc. and make it into my own. 

Here is my proposal: 

Intro:  Growing up, I was always self-conscious, even though I had friends in mainstream education, I still felt like an outsider and that my “normal,” friends couldn’t relate to me at times. I didn’t like sleeping away from home and I was overly self-conscious about what I wore or any risks of being mocked/bullied. The answer to my confidence issues was a Special Needs Camp in Lafayette, Louisiana. It was a day camp all summer, called Camp We Can Do.

Camp we Can Do, took children and young adults (ages 5-23) of all special needs. Every day they did some type of arts and crafts, cooking/baking in kitchen, some type of sports, morning exercises/stretches and a walk around the track, a group activity- whether it be playing out in the park area, we would go swimming on Fridays, and bowling on Tuesdays. There would be one “Big Field Trip” to places like NASA, Kemah Boardwalk, NOLA Aquarium/IMAX, etc. Sometimes we’d have small field trips like Candyland cottage sweetshop, the beach in lake Charles, Incredible Pizza/GattiTown when it was around, children’s museum, etc. They would also do at least one or two talent shows where kids could do karaoke, dancing, or whatever. We were encouraged to explore outside of our comfort zones. We were held accountable for our actions despite having disabilities/special needs.

Camp We Can Do was great back in the day, but now it isn’t what it used to be, but has inspired me and was a big part of who I am, that I want to build on the ideas from the Camp and expand into my Own.

I also collaborated with another former camper: Bailey Castille and will include her ideas as well.

               Bailey’s Ideas:

·        Camp all summer long (as soon as school lets out) and during school (after school and on weekends)

·        Frequent Field trips

·        Rotation sign ups (choices like electives)

·        Separate cooking and baking into two separate rotations

·        Life skills- Cooking, shopping, chores, laundry, etc.= independence skills

Joint Ideas:

·        Pet therapy

·        Music therapy

·        Writing therapy

·        Theatre therapy- dancing, acting, film

·        Art therapy- digital or nondigital

·        Crafting therapy

·        Gardening therapy

·        Camper group compatibility= personality questionnaires to avoid cliques and fights

·        Camper input= suggestion boxes, help with shirt design, theme, etc.

·        Girl activities (girl scouts, tea parties, dress up/fashion show, etc.) “girls’ day”/ Boy’s activities “boys’ day” = sports, boy scouts, etc.) —***Sign up/optional***

·        Reward/incentive program

·        Videos in the finale DVD slideshow

·        Snacks for children who forgot theirs

·        Camp Store= “Camp Bucks” for good behavior/reward incentive, can spend at Camp Store

·        Train older responsible campers to be future staff (Mentor Program) – Will hire future campers or let them volunteer****

·        DIY Craft Day- Choices

·        Weekly Newsletter/Mail for campers and family/ Calendar for month

Camp Field Trip Ideas:

·        Art, history, or science museums

·        Performing theatre shows

·        Avery Island

·        Sea World

·        Build-a-bear

·        Dave and Busters

·        Chuckie E. Cheese

·        Cicci’s pizza

·        Beaches

·        Aquariums

·        Campgrounds- (KOA, Cajun Campground, Poches, Cajun Palms, etc.)

·        Candyland Cottage

·        Children’s Museums

·        Libraries

·        USS KIDD

·        Blue Bayou/ Dixie Landin

·        Kart Ranch

·        NASA

·        KEMAH Boardwalk

·        EPIC Fun Center

·        Surge Entertainment Center

·        Jump Zone

·        Sky Zone

·        NOLA Aquarium/Zoo/Butterfly House/IMAX

o   =====Life Skill trip ideas:

o   Restaurants/bakeries/etc.- (Targils –Cooking classes? Deanos—Pizza cooking demo? Old tyme grocery—po’boy making demo? Etc.)

o   Grocery shopping

o   Shopping= malls, recreational

o   Laundromats

o   The Arc

o   IMPAC

o   UL Life Tour

o   UL/ LSU/ LSUE/ SLCC/etc. Campus tours

o   APARTMENT TOURS

o   GOODWILL

o   DREAMS Foundation

·        Horseback riding

·        Boating/fishing/crabbing

·        4wheeler/ATV riding

·        Pool

·        Bowling

·        Movie Theaters

·        ***Farther trips: St Louis, Mississippi, Arkansas, Disney World, etc.***

School Time Ideas:

·        Fall Bonfire

·        Fall Harvest Fair/carnival

·        Participate in community= parades, downtown markets, etc.

·        Dances (older than 10+) = Mock homecomings, Halloween, Christmas, Valentines, Mardi gras balls, (Mock debutant balls type things), Proms

·        Parties (any age) = Halloween, Christmas, new year’s, valentines, Mardi gras, easter, Memorial Day, 4th of July, birthdays**

·        Movie day= campers vote on movie to watch either owned or go to theatre.

·        Skating Rink Night or Midnight Bowling

·        Dress up tea party/ Etiquette for girls’ women, or fashion show/makeover—***sign up—optional***

·        Sports Fitness Day or scouts or 4wheelers-mudridding or fishing or something- guys day—****sign up —optional***

·        Jean day $1

·        Bingo

·        Bible Study

·        Talent Shows

·        Art or cooking/baking or crafting day (can even be woodworking crafts) or gardening

Last Day of Camp/Fun Day ideas:

·        Balloon artist

·        Magician

·        Carnival/fair games

·        Face painting

·        Petting zoo

·        Fun jump

·        Water balloons/sprinklers

·        Ice cream/snow cones

·        BBQ

·        Bonfire with smores?

·        Talent show time

·        Party?

Other ideas:

·        Cool down area for meltdowns

·        Staff to be tested Emotionally and background checks- No drugs/alcohol, no violence charges, no sex crimes

·        Not a daycare- must be potty trained or have an aid/caregiver

·        Have talks involving themes of:

o   Equality

o   Kindness

o   Respect

o   Confidence

o   Self-esteem

o   Anti-bullying

o   Friendship

o   Etc.

·        Include “mainstreamed” (non-special needs) children/young adults?

·        Sleep away camp vs. Day camp? (Maybe make it optional)

·        Bonfires with smores if sleep away camp

What the Camp Offers:

·        Art

·        Crafting (including woodworking, working with recycled materials, etc.)

·        (possibly) Sewing= sewing, crocheting, embroidery, etc.

·        Photo/Film (how to handle cameras, etc.)

·        Cooking

·        Baking

·        Sports and fitness

·        Survival/Scouts

·        Bowling (weekly)

·        Swimming (weekly)

·        Horseback Riding?

·        Boating/Canoeing?

·        Fishing/Crabbing?

·        Creative writing= short stories, poetry, whatever.

·        Dance

·        Fashion (design, sewing, etc.)?

·        Gardening and horticulture

·        Religion/Theology/VBS/bible study

·        Morning exercises/stretches and walk track

·        Weekly talent shows

·        Learning life skills, confidence and how to love yourself, making friendships, etc. ***

Rules:

·        No profanity (goes for everyone- staff included)

·        Respect all property of the camp (“you destroy it, you pay for it.”)

·        Wear camp shirts on all outings, as well as name tags, and stay with your group/staff

·        Pay ahead of time for trips (will not accept “day of payments”)

·        Treat each other and staff with kindness and respect:

o   Be helpful

o   Be kind

o   Tell if you have a problem (do not handle it yourself)

o   No stealing

o   No fighting

o   No arguing/back talk/disrespect to the staff

o   Tell a staff before you just walk off

o   Follow all directions/instructions

o   Label all your belongings- if not labeled and gets lost or stolen, not responsible.

o   Only time electronics/phones/etc. are allowed: Morning before camp starts, after lunch (quiet time), and Snack time, and Nighttime before bed (if sleep away camp)

Skills/ Life skills taught and offered (whatever able and under supervision):

·        Grocery shopping/ Recreational shopping

·        Sweeping/dusting/vacuuming

·        Making beds

·        Library- getting library card, checking out books, etc.

·        Teach how to take public transportation

·        Social skills?

·        Outdoor work- cutting grass, spraying, weeding, etc.

·        Washing dishes/load dishwasher/putting dishes away

·        Loading laundry washer/dryer, folding, and saving clothes

·        Setting a table

·        Cooking/baking

·        Putting leftovers away in fridge/freezer

·        Reading/writing

·        Writing letters

·        Making routines (to do lists, etc.)

·        How to fundraise/marketing

·        Counting and managing money (budgeting, rolling coins, etc.)

Sayings/ Mottos:

·        Try before saying “I can’t” = “Yes I can!”

·        Life puts pressure, pressure makes you tough= Diamond tough!

·        You are only as limited as you see yourself= don’t put yourself in a box of limitations

·        Life has obstacles, but they can be overcome= just find a different path!

·        Everyone has a different path and journey- don’t try to be like everyone else= being you is Beautiful= Be You tiful!

·        You are a diamond, don’t let the world dim your sparkle and shine

·        You are a star, don’t dim your light

·        You must train hard to be victorious= it is hard, but well worth it!

·        Life is a journey

·        You are from Louisiana. You are proud Cajuns or LSU tigers. In Louisiana, we don’t back down from a challenge, we grab hold of that challenge, wrestle with it until we eventually conquer it!

Fundraising Ideas:

·        Dances/parties

·        Sell plate lunches

·        Garage/yard sales

·        Benefit days (Fundraisers)

·        Go Fund Me/PayPal/etc.

·        Bake sales/Lemonade sales

·        Sales by “campers” (Interact and sale their cooked/baked/created/ or grown items)

·        Community day- set up booths and talk about and ask for donations (have campers help)

Each Camper gets (with admission):

·        Cap/hat

·        Shirt

·        Rubber/jelly bracelet

·        Backpack

·        Tumblr

·        Nametag

·        $5 in “Camp Bucks”

Guest Speaker/Guest ideas:

·        First responders (Police, firemen, ambulance, etc.)

·        Dentists

·        Eric Williams “Guns down,” chess spokesperson

·        Out of state people: Ali McManus, Madelyn Hubbs, Katie Ladlie, Mia Williams, etc.

·        UL Life/ Disability office

·        Librarians to come read to them

·        Famous locals: Drew Brees, Dev. Henderson, Sean Payton, Coach O, Lauren Daigle, Hunter Hayes, John Morgan (Ragin Cajun comedian), etc.

·        Local artists and musicians- Jaxon Meche (music), Eric Gautreaux, Lindy and Matt/One trick pony (Music), Whitney Marks (art), Emily Ortego (Music)

·        Roni Dubroc – about the Baton Rouge thing?

·        Local cooks/bakers/etc. to offer class

·        Girls’ and boys’ clubs?

·        Scouts of America?

Camp Name Ideas:

·        Camp Able

·        Camp Ability

·        Camp Potential

·        Camp Expectation

·        Camp Destination Expectation

·        Camp Equality

·        Camp Inspirations

·        Camp Victory/Victorious

·        Camp Glorious Journey

·        Camp Cajun Crew

·        Camp Conquer!

·        Camp United Hearts

·        Camp Pure Unity

·        Camp Utopia

People to Talk to for input, etc.:

·        Dreams foundation

·        IMPAC

·        Beacon Club (ULL)

·        UL Life program and office of disabilities

·        Dr. Beasley (UL)

·        Lion’s camp

·        ARC

·        Autism Societies

·        Families helping Families

·        LRS?

·        Bambi Polotzola

·        Laci Polotzola

·        Robyn Blackwell

·        State office of disabilities

·        Derrick McBride- One-piece Missing Foundation (Autism)

·        Boys and Girls Clubs

·        United Way

·        Church Camps

·        Dr. Donna wadsworth

Things need to do:

·        Present proposal

·        Community day- go out in community to present my proposal idea, give info about why this would be a great thing, etc. maybe have some special needs kids help…?

·        Find sponsors

·        Find a location

·        Get funding

·        Look at liability insurance, health care, health department assistance (red cross)

·        Look at buses and transportations services

·        Vocational ed. department or vocational tech schools support or assistance Rural health and rural education programs and grants**

·        Figure out budget and admission cost

·        Figure out if going to provide lunch or go to a school (like camp did)

·        Find and hire staff (including health care- nurses, lifeguards, etc.)

·        Figure out lesson plans for weeks/ activities

Things Needed:

·        Game tables (foosball, air hockey, pinball)

·        Art and craft supplies (Crayons, Markers, Paints, Construction Paper, Cardstocks, glitter/glitter glues, hot glue/hot glue sticks, cricut materials, paint brushes, scissors (kid safety scissors and regular scissors), chalk, pom poms, pipe cleaners, color pencils, pencils, pens, paper, jewelry beading and thread, friendship bracelet thread, duct tape/washi tapes, etc.

·        Games (Board Games), sports equipment (balls, bats, gloves, racquets, etc.), jump ropes, bubbles, water balloons, sprinklers, squirt guns, puzzles, etc.

·        Pool toys, goggles, sunscreens, pool noodles, inflations, kickboards, floaties, etc.

·        Snacks (drinks, chips, snack cakes, sandwich fixings, burger/hot dog fixings, brownie mix, cake mixes, jellos, puddings, etc. kitchen stuff, popcorn, stuff for smores, BBQ, ice cream sundae fixings, stuff for homemade ice creams, stuff for homemade snow cones/slushies/popsicles, stuff for popcorn machine (kernels, salt, butter, oil, etc.), etc.)

·        Books to put in our “corner library”

·        Movies/DVDs for “Movie library”

·        Fireworks (especially sparklers and “poppers”/” snappers”)

·        Wood for bonfires, firepit

·        BBQ Pit

·        Hygiene stuff- deodorants, soap, toothpastes/toothbrushes, Listerine, floss, shampoo/conditioners, Kleenex, sanitizers, etc.

·        First aid stuff- Neosporin’s, medications (Advil, Tylenol, Motrin, cough syrup, chloreseptic,) vapor rub, nose sprays, Band-Aids, ice packs, alcohol, peroxides, thermometers, heating pad, massagers, essential oils, etc.

·        Mosquito and bug sprays

·        Gardening supplies (seeds, bulbs, plants, soil, gardening tools and gloves, etc.)

·        Disposable cameras

·        Musical instruments (tambourines, guitars, ukeles, pianos/keyboards, triangles, maracas, dancing ribbons, etc.)

Campers are responsible for bringing:

·        Snacks (will be provided if forgotten)

·        Pillows/blanket for “quiet time” after Lunch (if going to lay down, if not bring book or some type of entertainment to keep quiet)

·        Jackets (in case it is cold inside building), change of clothes for swimming days (towels, sunscreen, clothes, etc.), change of clothes if not fully potty trained, etc.

·        Money (when= pay for trips)

·        Any medication the camper is responsible for taking

CAMP Groups:

·        Green– the youngest group (needs most attention/supervision)- not based just on age, but also how much supervision they require, emotional outbursts, etc.

·        Blue group– Second youngest group (still needs lot of supervision but not as much as green group)

·        Red– Second oldest group- getting ready for the older group, somewhat responsible and have good emotional control (Pink/purple: “Red group” age but need more help/supervision)

·        Yellow group– oldest group -somewhat responsible, “adults” of the campers (Orange: the “yellow group” age but need more help/supervision)

Adult, adulthood, Adulting, Chronic illness, Chronicillness, disabilities, disabled, Disableds, discipline, Ehlers Danlos Syndrome, EhlersDanlosSyndrome, Kyphosis, Life, medical, parents, Physical Disabilities, Scoliosis, Uncategorized, Zebra, Zebras

Food for thought…..

Food for thought… I had a diagnosis “Scoliosis “ and “Ehlers Danlos syndrome” since infancy. One pediatrician even told mom “you can just look at her and see she isn’t normal.” In reference to me.. a baby. An innocent little baby. Now my parents had 2 choices in raising me:

-Either prove society wrong and that my life had worth, treat me like they would like my older brother (who is “normal”) and raise me to be independent and self sufficient to the best of my abilities…

or

– and I’ve seen this with some families(not all)..give them a “pass”, no expectations of them, no discipline or correcting them. “Oh they have this diagnosis, they don’t understand “…blah blah blah excuse after excuse. “..no boo, they can understand “right and wrong,” but you just don’t wanna go through the “headache “ and time of teaching them. Or worse, you pity them and feel sorry for them;which will “cripple “ and “handicaps” them more. The world is rough and tough, it will not pity them, they need to be prepared.

My parents were tough but fair. I may not got namebrand clothes or expensive shoes, I didn’t get toys or candy every Time I went into store (unless I had my own allowance or money I saved or special occasion/holidays), I didn’t get cell phone till high school (16),I had some chores to do(whatever I could), I was held accountable for my grades and misbehavior. On the flipside, I never did without food, shelter, clothes, I had toys, I was taken on vacations,but there was lots of love and plenty of memories made. That’s wayyy important.

Life isn’t easy for anyone. But it’s up to that person to decide “do I wanna live like this? (Poverty, struggles, victim mentality “poor me,”) or do I pick myself up by my bootstraps and make better for myself.” Its all about perspectives, confidence, determination,and willpower.

Am I saying there aren’t obstacles in life that cause delays and blocks on your life road? No. Absolutely not. Never would I say that. And I’m not saying not to vent or fight for change. But it’s better to lead by example to be the change you wanna see. Be the spark for change; Be a Leader.

Turn to God’s light and goodness and he will bless you. God bless everyone.

Red heart
Two hearts
🙏🏻
disabilities, disabled, Humanity, Kyphosis, Life, medical, Physical Disabilities, Scoliosis, Special Needs, Uncategorized

Disability Journey: Camp We Can Do- My heaven on Earth!!

What teenage girl that has raging hormones and mood swings has never asked the question, “why? Why me?” or said the phrase, “I am ugly”? I know I have said it a lot. When you feel like the only person who has a disability or the only one “outcast from the ‘normal’ children, it can feel quite lonely and you feel very shy and don’t want to socialize and make friends; Camp We Can Do was my answer to this problem.

Camp We Can Do is a day camp that lasts all summer for kids with special needs of all kinds; ranging from ADHD to the most extreme of cases: Autism, Physical disabilities, Down syndrome, and some others. Too numerous to name them all. It is like the camp is a haven for kids who feel like outcasts due to their disabilities. It’s a “World of our own;” which was the theme for the 2007 camp year.

I first heard about Camp We Can Do from my friend that I made when I was in pre-school who has Autism; his parents told my parents about camp because Mom had tried to figure out something to get me out the house during the summers, and this was her answer; it didn’t involve pushing me to try to sleep away from home (I hated sleeping away from home; I got scared too much).

When I heard the news about going to camp, I was so nervous since I was going to be new to the camp, “how would the kids like me? Would I look like a freak to them too? What should I wear so I look okay? What if I made a mistake and got teased?”  Boy, did I worry so much! When Mom and I went shopping for the usual summer clothing shopping trip, I would always ask when I was trying on, “Does this hide my curve?” I would try something on and come out “Does this hide my back? How’s this swimsuit look? It isn’t too tight or reveals my back curve too much? “Does this look okay?” “Ugh, this looks so bad!” “Why I got to be so fat and ugly?!” “I hate my life.” Oh it could go on and on, I hated shopping because if something I liked, didn’t look good on me or didn’t fit right, my whole world would fall apart and then would come the waterworks; you should’ve been there to see an eleven-year-old throwing a tantrum in the store like a little baby!

The first day finally came, I was so scared and nervous: I didn’t talk to anyone, I kept to myself, and didn’t want to take part in activities. I was also very unprepared; I didn’t know I needed a blanket for nap time/”quiet time” or that I needed a snack for snack time (luckily a nice girl who is now one of my best friends, who was like five years old at the time, shared her snack with me.)

After that first day, I loosened up and realized, they won’t tease me or make fun of me. We were all in the same boat; cast aside from the “normal” kids.

When I was a camper at Camp We Can Do, I also acted like a “MOM” to some of the younger children. Sometimes I’d get dropped off early when Dad would bring me. I got there when some of the little kids would get dropped off, and you know little kids when Mommy and Daddy leave, they cry. I would entertain and make them forget that they just got “abandoned” at Camp. There was one little girl who I am not sure of her diagnosis when she’d get dropped off, I’d take her to the bathroom because we had limited staff for early drop-offs. I’d give her some Peanut butter crackers because she was often hungry, I bought her a toothbrush and would bring toothpaste and help her brush her teeth, and would wash her face up with a wet rag. After that, I’d take her to the TV room with the other Early Drop-offs, put her sitting on my lap, and hug her while we watched PBS kids (which I hated, but I dealt with it). When we’d go bowling, I’d often be the one to take her to the bathroom because I was the only “trustworthy” camper (nice way of saying Mentally able to handle the responsibility) and we didn’t have extra staff to take them individually and if we didn’t take her then and there, she’d sometimes have accidents. She loved to sit on my lap, whether it be for arts and crafts, cooking in the kitchen, etc. In the morning exercises, I would help get her engaged by saying “(Name), look. Just like I do” and she’d imitate me. She made me laugh cause she had this cute little phrase “Shake da booty” when they would play music at camp and she’d shake her butt. I often got into fights with the “foster grandparents” because they would force her to get out of my lap, “She’s too big for that, “or “you are a camper, not a staff,” or “She needs to sit in her chair.” Some days, when I’d clean out my closet (since I was in children’s clothes at the time) and she was about as big as I was, I’d sometimes bring her extra clothes and told her mom that she could keep it or bring it back, it didn’t matter. Sometimes I brought her toys and let her take them home for a week, and then she’d bring back to “trade out” for something new. I think her favorite time was snack time, though because she always got her favorite treat; yogurt. She loved yogurt and I always packed it. As soon as I’d open my snack box and she saw it, she’d squeal “OGIE!” (Which was how she said “yogurt”) and I’d spoon feed it to her every day. When she’d get sick at camp, I’d stay by her side the entire time. I’d run and get water for her, watch the nurse take temperature, run and get blankets, whatever she needed, I ran

and got. When we’d wait for her parents to pick her up, when she was sick, I didn’t care if I would get sick, I would hold her in my lap, covered up in a blanket and rock her.

I miss her so much now, but I think her family moved, but she will always remain in my heart as my “little camp daughter.”

Sure I loved my years at camp we can do, but there were downsides to it, as well.  One downside was when I stood up to a camper for one of my friends and this camper punched me in the face.  I got in trouble for not telling a counselor, instead of taking it into my own hands. Another downside was when I got in trouble with a counselor, but I was allowed to leave my groups to help with photos by the director. When the counselors would fuss me over what I deemed “Stupid stuff” I’d tell them off and got sassy. Now that I am older and have volunteered as a staff, I realize what they were trying to do. 

I loved camp, and I loved the friends I made through Camp We Can Do, but there were times I didn’t like as well but like everything else: You take the good with the Bad.

As a child with a disability myself, I have always been exposed to different special needs and disabilities, but my first “real” exposure to Autism didn’t happen until I was 12 years old and met a boy who would later be known as “my autistic stalker,” because he would call me all the time and never give me any space, but that’s later in this story.

When I was 12, I met “my autistic stalker,” at camp through his neighbor, and a counselor at Camp We Can Do, who had her own Autistic son. She drove all of us to Camp from Opelousas. My “Autistic Stalker” when I first met him, was a quiet, shy boy who mostly kept to himself except when he got the sudden urge to quote characters from cartoons; That is until he met me.

Don’t get me wrong, he was like that with me too, at first, but each morning I would get in the car, greet him with a smile “Good Morning (name)” and give him a hug. By the end of that summer, I had broken him out of his “Autistic Shell,” and got him talking. The following school year, however, the adaptive P.E. coach who traveled to all the schools, told me that I had developed a “Secret admirer” in this boy.

Since I had never “truly” experienced any relations with an Autistic boy before; aside from my Pre-K buddy, I did not realize what a crush from an Autistic male would entail. At first, I thought it was “Cute” and flattering: I’d let him hold my hand, I let him kiss my cheek, after all, I didn’t have a boyfriend; it got more severe the more I let it go on: pretty soon, he’d have a meltdown if I left the room just to go to the bathroom, yelling as loud as he could “JAMIE COME BACK!” and I was like “Dude, I got to go pee!”

I didn’t want to cut him off as a friend so I let him keep calling me, even when  he’d call more than once: and I had better answer or He’d call and call and call until I’d answer the phone, leaving a bunch of voicemails. I also couldn’t skip Camp or he’d have a meltdown, “JAMIE I can’t go to Camp without you,” or “JAMIE I HATE SICK! YOU GOTTA GO TO CAMP TOMORROW! I CANT GO BOWLING (Or SWIMMING) WITHOUT YOU!” Sometimes just to get him to not cry on the phone, I’d pacify him and say “FINE (NAME), I AM ALL BETTER” and go to Camp the next day, even if I felt like crud.  If his calling got on my nerves, and I didn’t want to blow up at him, sometimes I’d answer and try to disguise my voice (which didn’t work) and say “HELLO THIS IS PIZZA HUT. What size Pizza would you like?” He’d get so flustered and argue, “THIS Isn’t Pizza HUT, you’re Jamie Cormier!” I’d keep up the “pizza hut” charade until he’d eventually hang up, only to call the number again.

He was obsessed with Power Rangers and he always said he was the green ranger. I hated when my mom would bring him and I  to and from camp because this was literally the conversation:

HIM: Jamie, you are the pink ranger and I am the green ranger

ME: I want to be purple

HIM: NO! Girls are Pink!

ME: I prefer Purple.

HIM: NO! You are pink!

MOM: My favorite color is green, so I’ll be the green ranger

HIM: NOOO! Mrs. Cormier, I’m the green ranger and Jamie the pink ranger

(ON and on and on; the whole ride going to camp and the whole ride coming back.)

During swimming with the camp, we were play splashing each other, playing chase in the pool, when all of a sudden he grabbed me and dunked me under the water multiple times when I was caught off guard. Scary, right? I was terrified, and thankfully the counselors were around to stop him, and after the incident, he teary-eyed would point “but she got a bee in her hair, I was trying to get it out.” I have to laugh about it now, but back then, I was scared he was trying to drown me.

Another thing was when he first started his “crush,” I will admit that I used it to my advantage; didn’t want to get up to go get my snack bag? I sent him. Wanted fresh water from the fountain in a cup? I sent him. Wanted a “guinea pig” to test new snacks on? I

made him eat it first. There was a rolling chair at camp that my friends and I claimed at “snack time”. We sat in it while ate our snacks and if we wanted to move locations, we made him push us. I don’t know why, but we gave him the name “sofa” when he did stuff for us; kind of like a pet-slave or butler that we took in. Kids will be kids, even when you also have disabilities, still can “bully”; another dark memory from Jr. High years.

On the way to camp, we’d jam to mostly country music; he loved Rascal Flatts, and on the song “Me and My Gang,” for some reason he’d tickle me when the chorus would go “Me and My Gang.” (WHY DOES EVERYONE LOVE TICKLING ME?) I remember one year for the Camp talent show, he sang to “Life is a Highway,” I remember watching him and thinking “he never would’ve done that had he not met me and opened up,” I was so proud of how much progress he had made, even though sometimes his constant clinginess to me, drove me crazy.

There were things I loved about him: I could do whatever I wanted and he not hate me: Draw mustaches on his face, give him marker tattoos, sing at the top of my lungs and he didn’t care, he was really good at simple math (arithmetic) and drawing ninja turtles. For the Halloween and Christmas Dances, he always wanted me to dance with him at least 1x. The thing I didn’t like was how clingy he became since being friends (total 7 years) and how jealous he got when I was with other boys at camp, even when I became a counselor and had to interact with them as part of my “job.” When he saw me with other boys, no matter their age, he’d either tug me away as hard/rough as he could, chase them off yelling at them, charge at them physically; I had to send him to the “office” for that a lot! The other thing was, he was starting to try to kiss me on the lips; One day he tried, and it was a bad day already: I snapped and soon had him pinned to the fence, yelling “YOU DO THAT AGAIN and You will lose teeth or your lip will swell!” That Moment, I am not proud of.

I know he couldn’t help it, but my anger/temper is one of my biggest faults. I am working on it now because going into the field of special Ed, you don’t know what you could face, so I have to try to work on my anger/temper, and patience.

One moment I am proud of with this individual was when he started freshman year at my high school during my senior year. The first day, I saw him and his mom in the halls, and I promised I’d look out for him since I was a senior and would have some free time: I’d defend him in the hall (got sent to the principal so many times for fighting, kicking, and hitting anyone who would mock him and tease him). He would see me in the hall and he’d get all excited and do that “spaz out” flapping thing that some Autistics do and yell “JAMIE!” He usually saw me for lunchtime, so everyone was out of their classes at this time, and a lot of “normal Ed.” Students would imitate this action and laugh, or they’d mess with me “Oooh Jamie’s got a retard boyfriend!” You can ask my Graduating class, I could be a witch if you got on my bad side. Another thing I did to take up for him, was when I got him switched from his first teacher’s class because I had gone into her room to check on him during my free time, and she’d always have him in a time out for something that he couldn’t help; it was a manifestation of his disability, or she had the class doing kindergarten work and they were in high school; like color sheets or stuff like that. Yes, they had Autism, but try tapping into that brain, you might be surprised. I argued and fought with her so much about these issues and got sent to the principal again because I “was disrespecting my elders,” then the witch needs to do her job, eventually through my being sent to the office so much, my friend got switched to a new special needs class.

As much as his constant calling used to get on my nerves, I kind of miss it, but I also don’t want to reopen that door, because our future has changed, however. When I was first starting college he’d still call excessively no matter how much I’d say “(name) I’m in college, I need to study. As of this year, the calls have finally stopped. All I can do is pray that he is having a good life and enjoying it, whatever he is up to now. One thing I learned through “my autistic stalker friend,” is that there are boundaries and limits you need to set, it’s a social issue and as such, you need to make sure they understand you only see them “this way” and not “that way,” No matter how many times I just told him “No, just a friend,” he never understood: when this all started, I was only 12, I was too young and too friendly to know I had to set limits and boundaries, I never would’ve realized that things could escalate to what they did until I experienced it. As much as the situation would frustrate me because of the phone calls, the clinginess, etc., I still miss him as a friend, but also I don’t want to re-open communication because he’s finally understood I need boundaries and space, and I worry if I try to reinstall communication, that boundaries will be demolished and we’ll be back where we were with him, and I can’t risk a clingy jealous “stalker friend,” and a boyfriend: Life is about choosing and I will always be here if his mom ever needs to get in touch with me, I will always be here to help from afar and here to emotionally support them, but I just can’t risk destroying the improvement he’s made with realizing I need space and boundaries. I will always love him as a friend, and I love all the things I learned by meeting him and him being in my life; it’s just for the best if I don’t ever try to re-establish communication (or so I think. Maybe I am in the wrong, I don’t know.). Another thing I don’t like is that due to it being handled by Lafayette Consolidated Government, the camp cannot hire former campers (however they can volunteer) due to liability issues; who would know how to run the camp the way campers would enjoy it more, than a former camper? I just think it is unjust and unfair to former campers who have the mentality and responsibility, but just a physical disability, or a slight learning disability, but whatever.

Even now, when I am grown and in college, I continued to go to Camp We Can Do occasionally, but not as a camper anymore; now as a volunteer counselor because I can offer something other counselors can’t, Empathy; because I was once like them, new to the camp, scared and nervous, wanting to be accepted; I could share my experiences and give them advice. I could be like a role model they could come to, and I could provide a memorable experience for the future campers, so they will have fun and want to keep coming back like I did. However, that did not pan out because I didn’t mind not getting paid or the liability thing as much as what happened when I became a volunteer: I didn’t have to be there, I wanted to be there to help, but none of the other counselors (the ones that actually were hired and got paid) took me seriously: They never let me do anything to help or they picked minimal jobs (I guess out of fear of me getting hurt, I don’t know). I would go complain to the director and it was like she wasn’t listening to the problems I was having and it was like she would just tune me out when I tried to present an idea. Another problem I had was the kids; I understand it is odd having someone your height telling you to do stuff, they probably thought I was just trying to be a counselor, but on the first day, the director even presented me as “a volunteer” and to treat me as such; well no one did that: Not the campers, not the other staff, not even the director herself. As much as I miss my campers that held special spots in my heart, and I loved what the camp stood for, but it wasn’t worth the stress and the aches in my back from the stress: It was obvious I needed to move on from Camp We Can Do, and I have; although I still do keep in touch with a few of my special campers that have my heart.

colds, flu, Health, illness, medical, News, news media, Panic, Politicians, politics, sickness, Uncategorized, virus, Viruses

my views/opinions on CoronaVirus: STUPID!

The “dreaded” Corona Virus has now reached Louisiana. As of yesterday, there were 33 presumptive positive cases of it. For over a month, it’s been “Corona this, Coronavirus that,” to the point, I want to shoot myself if I hear CoronaVirus one more time. Even worse, now schools are shutting down, events are being canceled, and stores are running out of items- especially water and toilet paper; it is an illness people, not the end of the world- Practice good hygiene and handwashing, stay home if sick, and just sanitize if come in contact with sick people. It is that simple. 

the news media and politics are causing a panic and the sheeple are falling for it. This Coronavirus is just like a really bad virus/cold or flu, yet they stockpiling and shit like its the end of the world, shutting down schools…if you sick, stay home but this is going into borderline craziness. Smh. 

Every time a new sickness comes out..its always panic with politics and news media: Swine flu, Bird flu, West Nile, Mad Cow disease, Ebola, now CoronaVirus. Seriously people just practice good hygiene and if you sick, stay home. Common sense. Don’t be sheeple. Yet, we don’t shut life down for flu or regular viruses and people go in sick all the time and get others sick. It doesn’t make sense. 

disabilities, disabled, Handicaps, Humanity, Kyphosis, Life, medical, Physical Disabilities, Scoliosis, Uncategorized

Scoliosis Journey: Caution with a disability? No way!!!

As a child with a physical disability/deformity, you would think I would be cautious and careful, right? Wrong. I was always running around, hyper, cutting up, showing off; I didn’t know the risks of my behavior.

In 2nd grade, I had bent down really quick to pick up something off the floor, after a sleepover and instantly I fell to the floor holding my side; I had pulled a muscle. My friend ended up having to go home early and I had to lay with a heating pad on my side for the rest of the day and the next day (I think).

After that incident, you think I would’ve slowed down and been more cautious, right? Wrong again. I was still running around, hyper, cutting up; being a typical child. Mom and I were in the neighborhood one time, I was riding my scooter; we decided to race and when I went to put my foot back on my scooter after pushing it really fast, my shoe lace loop (the loops you tie) got caught on the knob part of my scooter that adjusts its height, and I fell over, scraping my knees; I couldn’t even walk.

Still, did I learn? Nope. There were times I fell just by walking on a handicap ramp after rain in new sneakers because they didn’t have “traction” yet and ended up with a giant bruise on my tailbone, burnt bottom of my foot by walking barefoot in the backyard and stepped on dad’s cigarette butt, splinters in my foot, ants in my pants from sitting in grass near a pile, I been there and probably done it all, but the worst one was in 9th grade when I broke my collar bone. How did I do that, you may ask? Well, let me just begin by saying “Never wear skates in the car.”

I had gone to a skating rink birthday party, and afterwards, I was still in “Skating mode,” where I still wanted to skate, but the rink was closing for the day; Mom let me wear my skates out to the car, so that when I got home, I could skate on the driveway.  When we pulled up in the garage, I went to get out of the car and lost my footing; I grabbed the handle to “catch myself,” and felt a sharp *POP* I instantly let go and fell on my butt on the ground. I screamed and cried because it hurt so bad; I couldn’t even get up on my own to take my skates off. Dad and my brother had to come out and help me; one of them took off and saved my skates while the other took me in and put me in my bed. After going to

the orthopedic dr., I found out I had broken my collar bone; I had to wear this strap thing that looked like a bra for your spine, for like the rest of the school year (March-May); at least, I got out of P.E. (not that I needed an excuse, once I got passed Jr. High, they never really pushed me to participate.)

Yes, with a disability, you want to do everything that other people do, you want to fit in, you want to be “normal,” but you also need to stop and think about the risks, weigh the pros and cons, before you do anything. I’m not saying, live your life in fear of doing activities, all I’m saying is slow down and think, do what I didn’t. Learn from my mistakes.