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!

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Fall, Fall Semester, Fun, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, Humanity, Humans, Humor, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sickness, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, students with disabilities, StudentsWithDisabilities, Syndromes, UnBreakable, Uncategorized, writing, Zebra, Zebras

Life Update: Resuming College, Registering Fall 2021 classes

Based on my current stamina level, I decided to only resume college part-time: 9 credit hours-3 classes scheduled: I will be taking Eng359:Advanced English writing for social sciences class (Monday and Wed. 1-2:15 p.m.), Socio364: Juvenile Delinquency (Because I feel like that would be interesting- on Mon, Wed., and Friday 10 a.m.-10:50 a.m.), and CMCN307: Communication in leadership class (online). I still have many many many choices in classes I want to eventually take but they were either full or not available this semester. I am just so eager to start back in the fall and I hope I don’t get burnt out, able to keep up and try my best and get something out of these classes 🙂 I’m very optimistic and I think I chose some pretty good classes. Let’s see how long that optimism stays. 😛 haha.

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Autumn, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, collagen, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, dreams, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, ENergy, Facing Fears, Fall, Fall Semester, Family, Friends, Fun, future, genes, genetics, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, heroes, Humanity, Humans, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Originality, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scary, School, Scoliosis, sick, sickness, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, story, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, UnBreakable, Uncategorized, Zebra, Zebras

Life Update: Fall 2021 Resuming College, Close to Bachelors Degree!!!!

What girl is resuming college in the fall semester and only 28 credits from bachelor’s degree in general studies with a concentration in behavioral studies…? 🙋‍♀️🙋‍♀️🙋‍♀️ this girl, right here! Woot woot.

However, being I have 28 hours left: All I have left is an Advanced English writing class, some general electives, and enrichment (concentration) classes. While I think if I do 2 semesters of full time-each one will be about 15 credit hours, (which is about 5 classes if its a 3-day class)- more if its a 2-day class.) that will be 2 extra credit hours in the end run, but then I will be done by end of next spring if I am able to keep my grades up.

However, I been out for a while and I get stressed and overwhelmed easily, so maybe Instead of setting myself up to fail and burned out, I only do a few part-time, even though I am thinking these will be “Easy” classes.

I don’t know what the workloads entail for these classes. Plus my stamina isn’t great right now. So looking at my energy level now, it’d probably be safest to do part-time in the fall, and then in spring, I can work my way up to more credit hours. (although maybe not, since spring starts in January and that’s still cold…unless it’s mostly online during that time. I don’t know. Time will tell.) Any advice is greatly appreciated. 🙂

Many people on my Facebook suggested only taking 1-2 other classes besides the advanced writing class because for most people, advanced writing classes take up a lot of time.

The next biggest issues while registering for classes:

1.) When going to the course description, some descriptions only say “will have an additional cost,” It doesn’t say anything about what the course is about or the workload expectancy: Like how is a student supposed to figure out if that class is a good fit with another class they are taking? UGH!

2.) Most of the classes I am looking at either is full to capacity, not a good fit with the advanced writing class, and some just aren’t available/an option for this semester.

So right now, the only class I can schedule is advanced writing: Could that be a sign from God? Like “Hello, all you need to take is this one class for right now.” Only time will tell.

#Medical, ADA, Adult, adulthood, Adulting, Athome, Autobiography, Child, Childhood, Children, Chronic illness, Chronicillness, collagen, College, Connective Tissue, ConnectiveTissue, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Friends, Friendships, future, genes, genetics, Handicaps, Health, HealthCare, Humanity, Humans, illness, Joint Pain, JointPain, Joints, Joints Pain, Kids, KyphoScoliosis, Kyphosis, Life, Louisiana, Love, medical, memoir, Mom, Momma, Mommy, Mother, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, Q and A, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Social Media, social networks, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, story time, storytime, support, Syndromes, UnBreakable, Uncategorized, wellness, Youtube, youtube content, youtube infleuncers, youtube tag, youtube videos, youtubers, Zebra, Zebras

Planning a Q and A video…with mom….Need questions!

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

Adult, adulthood, Adulting, anger, Chronic illness, Chronicillness, Deformity, disabilities, disabled, Disableds, EDS, Ehlers Danlos Syndrome, EhlersDanlosSyndrome, Handicaps, Humanity, Humans, illness, Kitchen, Kyphosis, Life, Louisiana, medical, Physical Disabilities, Relationship, Scoliosis, Special Needs, Spinal Deformity, SpinalDeformity, Spine, Zebra, Zebras

Very rough Emotional day

technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.

I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.

Then the icing on the “crap cake” of the day-

poor david just witnessed a “Jamie Disability Meltdown” Adventure

it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.

David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?

Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..

David: you can’t hold your hand flat?
Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.

David: come here. I’ll show you.
Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*

David: come on Jamie, just try my way.
Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.

David: okay. okay. I wasn’t teasing you. *trying to hug me*

Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.

David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.

Jamie: *sniffles and trying to calm down* I already had one to begin with.

————————–
hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol

and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.

I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.

Adult, adulthood, Adulting, anger, AntiBullying, AntiHate, AntiViolence, Black Lives Matter, BLM, Bullying, Childhood, Chronic illness, Chronicillness, College, Decency, Decent Humans, Deformity, disabilities, disabled, Disableds, Discrimination, dreams, EDS, Ehlers Danlos Syndrome, EhlersDanlosSyndrome, EndHate, EndHatred, EndRacism, EndViolence, Family, Friends, Friendships, future, Handicaps, History, Humanity, Humans, Justice, Kyphosis, Life, Louisiana, medical, Morality, morals, News, news media, Panic, parents, Physical Disabilities, Politicians, politics, Race, Racism, Racists, Right Choices, Scoliosis, society, Special Needs, Spinal Deformity, SpinalDeformity, Spine, Spoonie, Spoonies, Uncategorized, Violence, Zebra, Zebras

Thoughts of the day

Thoughts of the day…I love all my friends no matter their race, nationality, religion, political beliefs, etc. if you are my friend.(Except if you are racists, ableists- have negative thoughts about disabled people, etc.) We may not always see eye to eye on everything, heck we might even debate some things, but if we are true friends and mature adults, we can still remain true friends through all that- And as long as we respect each others views and don’t try to force our views down each others throats. .) I will always care about my friends even the ones I am not close with anymore. They are still in my memories and my heart, and If anything happens to ANY of my friends, you can bet, I will be there for them and their family. If someone hurts them or worse, I will seek vengeance for them. Hell hath no fury like a “Momma hen” type friend. I hit, kick, claw, and will beat people with a bat to defend my friends and family and singing “Someone gonna get their ass kicked today” LMAO. #UnitedWeStand #DividedWeFall

Some of my best friends are different race or nationality than me and they are some of the best friends I could ever ask for. They love and support me and my dreams no matter what. If anyone was to be racists to them, I’d be so angry and defend them, especially if I was right there and witnessed it- I’d probably get in the offender’s face and tell them off or worse- hit,kick, claw, punch, slap, maybe even beat to a pulp with a baseball bat- But I’d do that for all my friends and family, I am very protective of my loved ones and hate to see them hurt; whether it be physically, mentally, or emotionally.

Its 2020, and the world is still in chaos with discrimination and racism, hatred and anger, so much division. We need to come together and make the world a better place for future generations, because right now as much as I want to be a mother, I do not want to bring a child into all this violence, crime, and hatred in the world; Children cant even have childhoods anymore and are forced to grow up too fast in this world. 😦 We must do better for our children and our children’s children and generations to come!

Image may contain: one or more people and phone, text that says 'cricket 37% ALL COPS AREN'T BAD, ALL FRICANAMERICANS AREN'T TUGS, ALL WHITES ARENOT RACIST. IF WE COME TOGETHER AND UNITE AS ONE, WE CAN BE AN UNSTOPPABLE FORCE. unlock'
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.

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.

disabilities, disabled, Girl Scout cookies, Girl Scouts, Handicaps, Humanity, Kyphosis, medical, Physical Disabilities, Scoliosis, society, Uncategorized

Former Girl Scout: Top Cookie Seller

The Girl Scouts of America promotes character, outdoor activities, good citizenship, and service to others. As a child, I was a girl scout; and one of the top cookie sellers, thank you very much. HAHA! I joined girl scouts when I was in kindergarten. A few weeks into the year, our troop was about to get broken up, because our troop leader was moving or something, so they called a meeting and asked for volunteers to be leader; desperate to keep my friends and me together, I picked my mom’s arm up, and she got stuck being leader. Sorry, Mom for that! I enjoyed girl scouts, it was a fun way to keep up with my friends: we did crafts, went on outings, etc. Since mom was the leader I thought I’d get away with a lot; but, boy was I wrong! If I tried to pull a stunt, like not do an activity, etc., she’d pull me aside and fuss me/correct me. I’m not complaining, I wish she’d have done that more to help me face fears, instead of just doing activities I didn’t want to do due to laziness.

I loved it when it was cookie-selling time; I have always been very competitive and since I don’t have the physical ability to do sports, I do it with stuff like this, or games at the fair/games at Gatti-Land, and now the casino. When it was cookie-selling time, Mom would take the sheet to work, I’d go in the neighborhood, ask family, etc., just like I’d do for school fundraisers; I was very driven to get those prizes! It sure helps when you know almost ¾ of your hometown and you are a social “butterfly”.

In Girl Scouts, they also would have tea parties (I loved the cucumber sandwiches), holiday parties, we once slept over at the church hall, a lot of really fun memories; well, except the campout in the backyard, that was miserable. We got eaten alive by the mosquitos!

In 4th grade, we stopped girl scouts, because mom started working full time, and no one was willing to take over our troop, so it just fell apart. It was kind of sad because it gave me a sense of “normalcy” of a girl’s childhood, but mom always found a new activity for me to keep me entertained.

I sure do miss those days of cookie selling, earning patches, and being competitive; it was those days, I hadn’t realized I was different because I was surrounded by friends who treated me just like everyone else. Girl Scout forever!

AntiBullying, Bullying, Decency, Decent Humans, disabilities, disabled, Handicaps, Humanity, Kyphosis, Life, medical, Physical Disabilities, Scoliosis, society, Uncategorized

Scoliosis Journey: First Realization I was different and Bullying Experiences

I had to accept/learn that I was “different,” from a very early age; I want to say I was probably about 5 years old when I had the first incident in public. As a small child, I was always “stuck up my mom’s butt,” and went everywhere she went; this included grocery shopping. One day we were at the grocery store, but my legs or maybe it was my back, I just remember I was hurting or too tired to go walk the aisles with her, so I asked if I could go to the movie section to find a movie to rent; to which she agreed. The movie section was right near the entrance of the store and was the first thing anyone saw upon entering the store.  I had my back to the entrance while browsing titles to find a movie when a mother and her young daughter walked in; her daughter was probably two years my junior (younger than me), if that much age difference. Upon their entering the store, I heard the young girl say (really loudly, I might add), “Mommy! Mommy! Look that monster mannequin! It’s scary.”

Being the curious five-year-old that I was, I also wanted to see what had the little girl’s attention; I turned around to see her pointing, but her finger was in my direction. I looked around near me to see if there were any posters or anything nearby; not a thing, just me.  I would like to point out that before this incident, I never realized that I was different; I thought all kids went to the doctor as frequently, that all kids had aches and pains, everything I had or did, I thought all kids did the same. In embarrassment, the mother quickly ushered her child out of that embarrassing, awkward situation and into the store with her daughter whining “but mom, I wanted to rent a movie!” I was left alone in the movie section, alone and confused; the mother hadn’t even bothered to apologize for her daughter’s misunderstanding of my difference. I stared at my reflection in the glass case that held the movies and for the first time, I saw what others saw, my back sticking out; “I guess I kind of do look like a monster.”

With an empty feeling left in my stomach, I no longer had the desire to rent a movie. I wandered off to a nearby bench, propped my legs up to my chest, and laid my head on my legs.  Later, I felt Mom nudge me to look up; my face was splotched red, I had been crying. I asked her all these questions: “Mom, why do I look weird?” “Why does my back stick out?” “Why do I look like a monster?” “Why can’t I look like the other kids?” “Why did God make me this way?” On and on, the questions that had never once crossed my mind before came; it was like someone had opened a floodgate. Mom’s reply “because God loves you,” which later became “because God has a special plan for you,” because one of her neighbor’s special needs children had replied “because God loves you” with “I wish God would go love someone else.” Mom didn’t want me resenting God for what I was born with. It was also after this incident, my world was completely altered and I became slightly more self-conscious.

Sometimes, I would sit in my room playing on my brother’s keyboard, despite not knowing how to play a keyboard; I’d just play random keys, but I’d make up words and sing something like this,

 “God, make my back straight,

I want to run and play,

With kids who won’t run away,

Because they are scared of me.

Fix my back,

I want to make friends,

I don’t want to sit alone here,

Crying and feeling

‘Poor pitiful me.’

God, please fix me.”

I may have not written all the correct words that I had said since I was only 5 years old, but I don’t remember how it truly was written, but that was the gist of what I was trying to say.

Another incident, but it turned out great in the end, happened when I was in 1st grade. My class was right across from my former Kindergarten class. There was a small girl who had my former kindergarten teacher, who at the beginning of the school year, was also scared of me because of not understanding my disability. It was so bad, that she cried anytime I came around by her. I couldn’t go visit my former kindergarten teacher, except during their nap times, so that the girl wouldn’t cry. Eventually, though, she warmed up to me, got to know me, and we soon became friends. In 1st grade, I want to say around springtime, despite being told numerous times, “don’t’ go in the back of the school,” I did anyway with the little girl who was now my friend, and we both ended up with poison ivy.  As we blossomed into teens, we both hung out at the local skating rink, and as my self-esteemed lowered and lowered through the years, this girl would try everything to help me feel beautiful and like a “normal” teenager: trying to teach me how to dance sexual/flirty, trying to teach me to flirt, she would help me with my makeup, anything to try to get me to ‘loosen up’ and not feel so “different.”

I also had to deal with teasing as I got into the 5th and 6th grades, especially boys. For some reason at that age, boys think its “funny” to call people out on their disabilities/downfalls, whether it be glasses, short, super tall, etc.; Mine was my Scoliosis. I got called “weirdo, freak, humpback of Notre Dame,” probably a few other names, but those were the most

Popular, especially Humpback of Notre Dame,” by one boy in my class in particular.  It was around this age, that I started getting “fiery” and “feisty” and had anger management problems. I’d chase this boy and try to hit or kick him, to try to make him stop. These emotions escalated into Jr. High when I became a total witch (but replace the ‘W’ with a ‘B’), but I felt I couldn’t be soft and innocent anymore or they’d “walk all over me,” I had to be hard, and not show any sensitivity or softness, but I took that to the extremes, a bit. One thing is for sure, I never want to go back to being that person I was in Jr. High! 

I don’t mind if they (kids) are curious or scared, but if they would stop staring and making me feel awkward and “different,” and just ask what’s on their mind, I would understand and then maybe just like with the girl who became my friend, they would make a new friend in me too. That’s all I want, is for the staring and whispers behind my back, to stop. They might not want to be my friend, and that’s okay, but if they just want to know, then just ask; don’t stare at me like I’m at some sort of Freak side-street show; because when you stare, that’s how I feel, especially when whispers accompany the staring. Now, I want to address parents; instead of telling your kids not to ask questions, encourage them to do so. More than likely the person will feel relieved and somewhat happy they asked, instead of being constantly stared at and whispered about. I know parents don’t want their kids to accidentally offend people, but usually, people who have disabilities are hard to offend unless you say something extremely mean to their face, but usually, if it’s a curious little kid, they won’t get offended. Just try it that is all I am asking.