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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)

Music, Music Therapy, MusicTherapy, Uncategorized

Youtube: Music and fun

 I have always loved music. I may not have a great singing voice or ability to dance good, but play a good song and get me with just family/friends (if people I dont know are around, I WILL NOT PUT MYSELF OUT THERE), I love to have fun. It gets me out of that “poor pitiful me, I hurt all the time,” Mood. 🙂 

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Disability update- Scoliosis Update: St Louis check up appointment

 On September 22, 2020, I had my appointment with Dr. M Kelly at CAM Center in St Louis, Missouri. He didn’t seem too worried about the broken rod at this time. the rod is broke but it’s still got some support from other rods and such, we not doing anything at this time (if rod gets worse or something, then we’ll see our options. Not really wanting to go back in at this time because the wound I had previously s finally behaved and “quiet.” So he’s like “let the sleeping dog lie,” to which I translated “don’t poke the bear” and he agreed.The “rod pain.” Is not rod bc the broken rod is on other side of my back, but it’s probably “muscles” or nerve pain instead. Which thinking back after my surgery in 2012 I did have similar pain but this round feels worse than last time. Idk. Maybe my fall made it worse..idk. 🤷‍♀️🤷‍♀️🤷‍♀️ anyway that’s the update.

other than that it was a great visit. I spent over a week (September 20- September 29) at a friend’s house; her family tried to convince us to move out there. LOL.

In other news, even though the infection has cleared up in my back, they still want me on infection meds. Also in other news, the rib pain that used to plague me before I had that wound issue start (after 2012 until the wound started,) is back. UGH. wish that would’ve stayed away.

Still no word from the geneticist about an appointment for my EDS- UGH!

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disability journey: Broken rods – facing my parents and such…

 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well. 

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Disability Journey: Broken rods again..What does it mean?

As we know, my rods are broken once again, but until Dr. Kelly receives my Xrays from OGH and I hear back from him and go to my appointment in Septemeber, we do not know what will happen. Will I have another surgery? More than likely- I mean my rods can’t stay broken. What does that mean?  Well, more than likely it means another surgery, recovery all over again, push back college again, postpone the wedding again, having to raise money or apply for hardship case again since St Louis Barnes Jewish doesn’t take out of state Medicaid, and the talks of David and I starting a Food truck business will also be put on the backburner. 

I am tired of the rods breaking; this is the 2nd time! Maybe I should just put myself in a plastic bubble or “ground myself” permanently into a wheelchair and say “Fuck walking” – maybe I won’t injure myself, since I can’t seem to not be a klutz. I don’t know what the answer is. 

I am just dreading it. Dreading facing my parents about it, dreading facing doctor kelly about it, I know accidents happen, but I feel like I am a disappointment and let everyone down even though I did everything right this time: I didn’t get on inflatables again (I learned my lesson from last time), I was cautious when picking up on my niece or stuff, I was cautious and didn’t bend- instead I squatted or got on my hands and knees,) and yet, I still broke my rods. I wonder if my Ehlers Danlos has something to do with it? Hmm. Guess that’s a question for when I do see that EDS genetics doctor. 

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Disability/Scoliosis/EDS Journey: Ended up in ER

 8/12/2020

So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier? 

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disability Journey: Thought of the day- Medications and side effects…

 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”

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youtube video: Cover “Unbreakable”-Ali Mcmanus

In the video, I was in the car jamming to my new “theme song” Unbreakable by my good friend, Ali Mcmanus. -video July 17.

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Putting my tiktoks on youtube

just in case we lose the app because of Trumps talks of banning the app. (I really hope Microsoft is able to buy it.) I love some of the videos I made. 

Tiktok is one of the few things that I can do to entertain myself on a pain day. I really hope it doesn’t go away. 

anyway, here is the video . 

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EDS Journey: found a possible doctor??!

so here is the latest development in my EDS journey: I am in several Ehlers Danlos groups on Facebook. And they gave me a few names of geneticists who are listed as pediatrics but also do see adult patients with EDS. So I called the one that was named multiple times to confirm that they still do this and they do and also take Medicaid. So I will give their name to my GP on wed. when I go for a medical checkup so they can refer me. #Amen#GodBless❤ might finally be getting answers .