- Видео 20
- Просмотров 27 000
Life in Bonnieland
США
Добавлен 1 май 2018
A girl and her family living adventurously in Michigan, USA despite the daily struggles of chronic illness. (I have Ehlers Danlos Syndrome, POTS, suspected MCAS, etc.)
We are in the process of adopting our children through the American foster care system, we enjoy accessible travel destinations, and we are proud Catholics. Come along with us and see how disability does not have to be a life sentence!
Why "Bonnieland"?
Because, as an autistic person, I was always happily off in my own little world as a child. My mom could often be heard saying the phrase, "Earth to Bonnie!" And, as an adult, I still struggle to understand some things about how the rest of the world operates. It feels like I am an alien visiting earth and observing human nature from the outside.
Having a chronic illness which often leaves me homebound can add to my sense of isolation. Since I can't easily join your world, I want to invite you into mine.
Welcome to Bonnieland!
We are in the process of adopting our children through the American foster care system, we enjoy accessible travel destinations, and we are proud Catholics. Come along with us and see how disability does not have to be a life sentence!
Why "Bonnieland"?
Because, as an autistic person, I was always happily off in my own little world as a child. My mom could often be heard saying the phrase, "Earth to Bonnie!" And, as an adult, I still struggle to understand some things about how the rest of the world operates. It feels like I am an alien visiting earth and observing human nature from the outside.
Having a chronic illness which often leaves me homebound can add to my sense of isolation. Since I can't easily join your world, I want to invite you into mine.
Welcome to Bonnieland!
Autisitc Woman Stims on Camera for the First Time Ever!
TELL ME YOUR STORY OF BRAVERY IN THE COMMENTS. I NEED TO HEAR IT! 💜💜💜
I was inspired by an Instagram post by Elizabeth Gilbert in which she suggested that we all tell each other stories of bravery during this time of fear and uncertainty. The goal is to comfort each other and to remind ourselves that we've been brave before.
So, in that spirit, I want to create a new story of bravery by sharing a part of me that I have hidden for most of my life. My autistic stims.
Growing up, adults in my life called my stims "institutional behaviors" and told me that only severely deprives children in orphanages rocked back and forth or spun in circles for comfort.
Well, I will be 30 years old this year a...
I was inspired by an Instagram post by Elizabeth Gilbert in which she suggested that we all tell each other stories of bravery during this time of fear and uncertainty. The goal is to comfort each other and to remind ourselves that we've been brave before.
So, in that spirit, I want to create a new story of bravery by sharing a part of me that I have hidden for most of my life. My autistic stims.
Growing up, adults in my life called my stims "institutional behaviors" and told me that only severely deprives children in orphanages rocked back and forth or spun in circles for comfort.
Well, I will be 30 years old this year a...
Просмотров: 3 125
Видео
Visiting Two North American Cities with a Wheelchair | Which Is More Accessible? ♿
Просмотров 5064 года назад
My sister, Lindley, came to visit from Tennessee and we had a great time exploring Windsor, Ontario and Grand Rapids, Michigan. Throughout the video, I give some insights into the wheelchair accessibility of each city. Have you ever visited these cities? What do you think about their accessibility?
2 AWESOME Wardrobe Hacks for Chronic Illness Warriors
Просмотров 3974 года назад
If your pants always hurt you or you struggle to leave the house to shop for clothing, have I got some great hacks for you! 💜 Links to items from my Amazon Wardrobe order: www.amazon.com/gp/product/B078ZG29PM/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1 (The jeans that I'm wearing in the video) www.amazon.com/gp/product/B07JP424GQ/ref=ppx_yo_dt_b_asin_title_o01_s01?ie=UTF8&psc=1 (The shirt ...
Detroit Zoo, Christmas Adventures! | Holiday Visit with Audrey
Просмотров 974 года назад
On this last day of the Christmas season, I present to you: Accessible adventures! My sister, Audrey, flew in from Tennessee on her college break and we had a great time seeing the lights at the Detroit Zoo, celebrating Christmas with Matt's side of the family, and baking to our hearts' content. If you are planning to attend a holiday light show next season, I give some tips for making it a suc...
$5 EpiPen?! Here's How I Got Mine!
Просмотров 2954 года назад
Epinephrine auto-injectors can be EXPENSIVE. So expensive that many people who need them go without due to the prohibitive cost. The most recent information that I could find online about getting affordable epinephrine is 2-4 years old, so I decided to share my experience with finding a cheap solution to the EpiPen problem. I hope that this hack allows you to fill your auto-injector prescriptio...
A Beginner's Guide to POTS + What Doctors Don't Know
Просмотров 3965 лет назад
Step into my virtual classroom and learn the basics of a condition which is commonly seen in Ehlers Danlos Syndrome patients, but poorly understood by the medical community. I will teach you some of the major symptoms to look for, the strange method used to diagnosis the condition, and a few of the treatments that some doctors prescribe. Stay to the end if you want a little pep talk! Please exc...
Visiting Mackinac Island with a Wheelchair
Просмотров 9125 лет назад
In this video, I give my tips and insights into visiting the upper peninsula of Michigan, including Mackinac Island, with a wheelchair. We stayed at an adorable little cabin in St. Ignace and even brought the pup! 🐾
DITL Podiatrist, Rheumatologist, Grocery Pick-Up
Просмотров 785 лет назад
Come along with me on my busy Tuesday out of the house. I am usually stuck at home, so I thought I'd take the day to film my mini adventure 😅 You can see how I assemble my wheelchair by myself and learn a bit about how I navigate doctor appointments with a complex illness. How was your week? Let me know in the comment section! 💜
Farmers Market Haul + Wheelchair Problems | Grandparents Visit
Просмотров 1535 лет назад
As a way to say " Happy Grandparents' Day!" to my amazing grandma and papa, here is a little video of our adventures during their July visit this year. Matt and I always enjoy their company. We were happy to get to spend some time with their pup, Darby, and to host dinner/game night with Matt's parents while they were here.
DIY Faux Brick Backsplash for Less Than $40
Просмотров 8765 лет назад
Watch 'til the end of the video to see the materials that we used. I will also post links in this description soon. A huge "thank you" to my brother and sister for making this project happen!
Exploring Detroit + City Accessibility Issues | Sibling Visit Part 2
Просмотров 1385 лет назад
Come explore Detroit with Matt, Pierce, Lindley, and I! We enjoyed the waterfront, admired the cars the Renaissance Center, ate an Irish pub, and even braved the Detroit People Mover. Spoiler alert: We survived the DPM 🙌 At the end of the video, I share a sneak peak at the fun DIY projects that we undertook this week. What do you think?! I'm looking forward to hearing from you in the comments s...
Day Trip to Canada! | Sibling Visit Part 1
Просмотров 815 лет назад
Two of my eight siblings came to visit Matt and I last month. We had so much fun hanging out with them! So much fun that I couldn't fit it all into one vlog. Stay tuned for part 2!
Wheelchair Gardening! 🌱♿
Просмотров 1,7 тыс.5 лет назад
See how I use raised beds and grow bags to garden from my wheelchair. A giant thanks to my sweet husband, Matt, for doing the heavy lifting (and constructing the raised beds!) to make my gardening dreams come true.
Phone, Wallet, Keys? | 10 Chronic Illness Purse Items
Просмотров 1715 лет назад
This week, I step down from my teacher pedestal and show you some simple, practical items that make my life with chronic illness easier. I share some items that are unique to my purse and one item that I think ALL migraine sufferers should carry. What's the weirdest or most useful thing that you carry at all times? Let me know in the comments! Links to my purse items, if you want to purchase an...
What the Heck is EDS? | Thorough Medical Explanation
Просмотров 5225 лет назад
Welcome to my classroom, Friends! In this video, I give a thorough explanation of the genetic condition, Ehlers Danlos Syndrome. I guarantee that you would not learn more if you enrolled in medical school. Plus, you'll get fun Doctor Who references, a CRAZY fact about EDS, and get to witness me butcher long words. For those wondering about collagen supplementation, go to minute 6:31 to discover...
EDS Awareness Month Fundraising Update + 5 Fun Facts About Dislocations!
Просмотров 965 лет назад
EDS Awareness Month Fundraising Update 5 Fun Facts About Dislocations!
Adventure Alert! Roadtrip to Tennessee | Memorial Day Weekend
Просмотров 1905 лет назад
Adventure Alert! Roadtrip to Tennessee | Memorial Day Weekend
A Tour of My Custom Wheelchair | Tilite Aero Z with SmartDrive
Просмотров 16 тыс.5 лет назад
A Tour of My Custom Wheelchair | Tilite Aero Z with SmartDrive
Tribute to Jaquie Beckwith (Chronically Jaquie) + A Way to Honor Her
Просмотров 1,1 тыс.5 лет назад
Tribute to Jaquie Beckwith (Chronically Jaquie) A Way to Honor Her
I love your creativity!❤
Sir I want to leave your mobile no
💣💣💣💣💣💣
You stated that the model is an areo z 2 . When doing research I don't see anything with a z 2 model. Can you please tell me what the difference is between theaero z and aero z 2? Thank you
Hello! It is the Tilite Aero Z Series 2. Here is a link to more information about this specific model: www.spinlife.com/TiLite-Aero-Z-Series-2-Rigid-Wheelchair/spec.cfm?productID=93114 💜
Thanks
What are you talking about? The brand is Permobil.
You are correct. Permobil bought Tilite a while back. 💜
Beautiful video Bonnie. Thank you and God Bless you.
This video is so helpful! I’m a newly diagnosed POTS patient, who has diagnosed hyper mobility, but not EDS (due to lack of available specialists where I live in Canada). I’m also Autistic. This is super helpful as I’m needing an ambulatory wheelchair and have been using rentals for about 7 months. This seems like a perfect option for me - thanks again for the great video!
I started watching your channel because of your chronic illness content. I didn't realize you are autistic...but I also didn't realize I am autistic until earlier this year. I didn't realize what some of my stims are until watching you. Thank you for being vulnerable and sharing. ❤ (red heart emoji)
I'm also Autistic and have EDS 😄🥰🤗
Woot! Love meeting other people with the same combo! 💜💜💜
@@LifeinBonnielandMe too!
I'm sorry, but that chair is definitely not made to fit. Who scripted that! It's 1 1/2 to 2 inches too wide and the with your apparent core, the back could be 1/2 to 2/3 as high. You are swimming in there. What is wrong with the people who script these things!! As an incomplete paraplegic of 44 years, this makes me sad that this is still happening.
Hi Brian! I was recently fitted for and received a second chair, and the measurements are almost identical to this one. As I am not paraplegic, I have very different needs for my wheelchair. I cannot have anything touching or squeezing my hips, and I live pretty far north where I need plenty of space on either side of me for bulky winter coats. I'll be making another video soon to showcase the differences between my two chairs 💜
In Afghanistan we dissolved 2-4 benedryl in liquid and would administer it that way. Kids mouth swelled up so bad and we just intubated and administered it in the tube with a reverse airflow tube in side. Do what ever you can eh
My father hates my stims so much
I'm sorry to hear that. 💔 I wish more parents were better at loving their children 😓
Got mine for $2.06 at Walgreens!! Cant believe it!
Whaaat?! That's amazing! 🏆
this looked so fun! and it made me really happy. i’ve been doing a lot of research lately about autism and seeing people stim makes me feel very comfortable. i thought it was just me doing all of these funky little things this whole time but no! there’s a bunch of us :)
Say “oh, I love that” when you rocking while moving your feet came up and then the next clip was something I was actually doing at that moment: feet up in the air 😂 love these so much. Minus spinning. I get dizzy before even one full turn
"institutional behaviors" - my god, that's horrible and ableist. Your stim dance is beautiful. So many of your sims look so joyful and happy-making. :) I can relate to lots of these. As far as I know, I'm not autistic, but my sensory processing, hyperfocus, and other traits mean than there's a lot of overlap with the autism criteria, except for the social cues. I want to share this article with you. It helps people realize that everybody stims, but only some (usually visibly disabled, especially those with high support needs) people are "corrected" by authority figures or stigmatized. All nervous systems need stimming; some stims are deemed more socially acceptable. www.tsbvi.edu/component/content/article/102-deafblind-and-visually-impairedmulti-impaired/2584-looking-at-self-stimulation-in-the-pursuit-of-leisure-or-im-okay-you-have-a-mannerism Also, regarding "institutional behaviors," I worked at a school for the blind, where students are finally able to live free as themselves, in a community of peers who accepts them, stims and all. No matter how it's defined in the law, this is a least restrictive environment! (The definitions originally referred to institutions where people were receiving no education at all. You can thank families who felt it was unfair that they were told to lock away their children away without a right to an education for creating our first special ed rights laws. But that law defines specialized schools (for the deaf, for the blind, etc.) With specialized education that is the most barrier-free for many students as the same kind of restrictive institution that didn't provide education at all. But I digress...) I know that some staff in the special ed field are still of the opinion that you should just tell everyone to stop stimming. It's very misguided and can be harmful. Some people need stimming for sensory or emotional regulation and they are actually doing what's healthiest for themselves. The key as a staff member in special ed is to teach students that certain stims are more socially acceptable and certain stims are unsafe to physically do in certain situations (hot kitchen, in someone's personal space, very close to a wall that you can't see, etc.) but can be safely done in other environments. It's also important to teach kids to be aware that their stims might be in conflict with someone else's sensory needs, and to be respectful about, for example, the visual or auditory noise their movements make that can dysregulate someone else and cause them distress. I also always make sure that students understand that people who don't know them might stare and assume that they're not very smart or can't do certain things. It's not true and it's not the student's fault, but they do need to know that misperceptions are happening and could negatively affect them in, for example, a job interview or when making friends with someone who's never known anyone who makes movements like that.
This is really well organized and clear. Thanks so much for linking to the science saying I didn't cause it! It's necessary self-care for me to lie down with a heating pad as much as I can, so I can conserve energy to do all the other things I have to do, and then recover from them. I have severe fibromyalgia and just found out I also have POTS. Finally, an explanation for the dizziness. But also, POTS doesn't seem to be any more treatable than fibro is. Ugh.
I have some stims, like pulling my hair, twisting it, etc
I have severe outdoor allergies requiring me to carry epipens. I haven't filled my prescription for years because my hospital copay is cheaper that the 700 bucks they were trying to charge me at walgreens.
It sucks so much, doesn't it! 😩 I have learned since making this video that my insurance covers the generic version of AdrenaClick less well than it covers the generic version of EpiPen and that's all that the pharmacy near my house carries currently. It's so inconvenient to have to transfer my prescription multiple times to figure out who covers what and who has what in stock. Ugh. I hope you are able to find a place that can you yours for less than $700😱
I'm on my husband's profile, I'm a woman. haha. I am seeing my pcp in 10 days and I'm going to ask for a referral to the right person to diagnose me. I am 100% positive I have this.
Would it be impossible to get insurance to cover the tilite and the smart drive? What qualifiers did your physician write in your DME order for the insurance?
Thank you so much for being brave.. That is the best clarification of Stimming l have ever seen. I needed that clarification ❤️💕
I almost cried watching this. It was so affirming to watch you enjoy your stims and invite us into that experience. I resonated with each and every one and it's like something clicked and now it's okay. As someone in their mid-twenties who is only finding out this month why their life has been so difficult for "no reason", thank you so much for sharing your stims with love - know that you've changed a life today!
I'm also a dancer, and seeing you move through stims and dance at the same time just brought me so much joy and vicarious peace
Thank you, it really helps.
I love this! I’m waiting for my own ASD assessment (32 years old), which is the same day as my daughter’s assessment (3years old). I’m obsessively searching for examples of every autism trait to compare myself with and stimming has been the most difficult one to pin down. I would actually be thinking to myself “I don’t stim,” while rocking side to side. Describing stimming and demonstrating it are totally different and this video helped me a lot! Thank you so much for sharing and for your beautiful words of encouragement in the start of the video. :)
My stims: Rubbing hands together and squeezing them Tensing my whole body or certain parts Bouncing Licking teeth and sticking my tongue out Pacing Leg shaking and foot tapping
Tensing the whole body or parts of it is one of mine too! Thanks for sharing yours 💜
@@LifeinBonnieland <3
This is SO beautiful. Rebecca and I watched this, and feel like it's something everyone should see -- this is what courage is -- being vulnerable in such a powerful, REAL way. We have so much respect for you! And so many of those movements looked positively delicious! The beads on lips, the wind on face, the lying down on the ground among the trees and grass . . . wow!!! We are so glad we discovered your channel!!
Ur so cute
... this is interesting... I do many of these things. Rocking with or without a chair and swinging on a swing are especially my favourite. I didn't see them as stimming. Still learning/seeking diagnosis. Thanks for your bravery and sharing your private moments.
Thanks for joining me here! I didn't understand them as stims for a long time either. There's a great meme about the stages of dawning awareness of autism in oneself. I wish I could link it here, because I imagine it would resonanate with you. Good luck in your diagnosis journey! And if you are unable/end up not seeking a professional diagnosis, know that self-diagnosis is MORE than valid in the autism community and you are welcome here 💜
Just simply ❤️
Toronto is good. :)
Thank you
ruclips.net/video/T4br6_OjiyU/видео.html
I hope that one day my autistic daughter is able to share her story
Bonie, I think ths was the best explanation I have heard. Good job.
I broke my neck...C4...which regulates the heart rate. How do I know if the elevated heart rate I am on beta blockers on is from the broken neck or POTS? Re coat hanger pain, how do you know that isn't isn't from Chiari...also, a spinal cord injury person will have pain at the point of impact, which in me, is C4...so how do I know if I have coat hanger pain?
Ooh those are interesting thoughts! I'm glad you brought all of them up. When a person has multiple issues going on simultaneously, it can be really tricky to pinpoint the source of the problem. There are forms of dysautonomia associated directly with SCIs, so you might have dysautonomia, but not necessarily POTS. It seems to me like doctors and researchers are still trying to piece apart the different forms of dysautonomia themselves, so getting a perfectly accurate dx when you have multiple issues might not be possible. As for chiari, an upright MRI is the only reliable way to diagnose or rule out that condition. (Even though doctors, including some at the Mayo Clinic will tell you otherwise because they are not actually experts in that field). 💜
@@LifeinBonnieland I am so glad I just found your channel. I was at Mayo and they didn't even find the Chiari. They did find the Spina Bifida though..and got side tracked on that. The problem is neurologists sometimes focus on one issue, and then don't look elsewhere.
What a gorgeous dog!!! Audrey's gift was amazingand was well worth the effort. Hand crafted gifts are so much better than store bought ones because anyone can go bu a store bought one. But to make it from scratch...it's the thought there that means more than anything. I can SO assocate with the Tylenol bit...oh yes. Tylenol usually starts my day.
Thank you! She is super pretty 😍🐕 I didn't know what a parti poodle was until we got her and now I'm hooked on the color! Go team Tylenol!
@@LifeinBonnieland actually, I never knew she was part poodle. I love those dogs. She actually looks like a German Short Hair cross...absolutely gorgeous. It must be one of those doodle mixes...a pudlepointer: german-shorthaired-pointerpoodle. I didn't get a good look at he face...just her markings.
@@morgancalvi6675 She's actually a purebred poodle. The color is called "parti". We get asked a lot if she's a pointer 😀 People don't realize how different poodles look when they're shaved down.
@@LifeinBonnieland Oh she was shaved down? That explains a lot regardng the color. I was thinking tri colored as in the cocker spaniels. Parti in this case has to do with base coat colors. You are lucky to have gotten such a well bred animal.
That foot rest is the TiLite Angle Adjustable footrest which was pretty much made for the FreeWheel. 😳 18 X 18...how much do you weigh? TiLite really needs to be a shamed of themselves with their back design. That will be saggy and unsupportive with in a year...if it lasts that long. The front casters should swing freely. You should probably check those. I thik if you weigh the parts of the chair individulaly, you will find the FRAME weighs 12 1/2 pounds. There is no way an entire aluminum chair comlete with wheels, seat and back, weighs 12 1/2 pounds. The cushion is adorable, but really should be the width and length of your seat. You will find pressure sores will start on the thighs, toward where your knees are. I'm assuming you are just a part time wheelchair user...which is a good thing.
Thanks for pointing out the foot rest. I went back to the specs on my receipt and you're right. Good eye! As far as the seat size goes, it's less about my weight and more about how incredibly tall I am. My legs are really long and my hips go almost to the edge of the seat when I'm wearing anything more than a thin t-shirt. I completely agree about the backrest. I've had my chair for about two years now and it has never been terribly supportive. I usually use a lumbar cushion for added support. 💜
@@LifeinBonnieland I tried those lumbar cushions...in my opinion, they aren't focused on the back, but more the tushy. I have the Jay 3 back. Do you get it because insurance will pay for a cushion every 2 years? If your back ends up bad becuse of the bad back...it's almost worth paying out of pocket. I have the deep contour Jay 3.
Where do you get the deep contour j three? Do you like it and is it very comfortable
This makes me really happy! I haven't been diagnosed but have an appt coming up for an assessment so I've been thinking about a lot about it and some things make me sort of mad. Like, I remember repeatedly getting in trouble in primary school for rocking during class and flapping y hands against my ears during parade. I learned to supress it, but now I'm an adult I'm not hiding it anymore. My stims include tapping my feet or bouncing y legs, tiptoes, the finger touching (which I've never seen anyone else do!) and opening/closing y hands quickly, running y fingers through y hair and tapping my cheeks, stroking things with pleasant textures (currently making a big ol blanket out if pompoms) and wiggling my tongue against my teeth.
I am thinking my son when he grew while watching. Thanks for sharing
My 6 years old son is hand stimming ,sometimes jumping, sometimes all his body is shaking.He started to understand and he used to explain that he is stimming because he is so happy and excited.Me, when i was abiut hus age i used to ssuck my finger and play with corner of my pillow, so hard,than they were thorn.Sorry 4 my english.Thank you for your honesty and for this movie.
Wow! That's so beautiful! Thank you so much for your sharing about you and your son. It seems like you two have a wonderful relationship. And now you share a common bond because of stimming 💜 I also used to rub anything that was silky, including my pillow case, the edge of blankets, etc. I rubbed the ear completely off of my toy rabbit when I was a child, because it was so soft and silky 💜
I cried, this is me and my adult daughter.
Thank you for sharing! I was rubbing my thumb on each finger exactly like you, as I was watching the video. I hadn’t even realized that was a stim.
Hello Bonnie, I had the experience last nite of a dear sweet friend going into a full stimming self sooth. (hence coming here to the internet to better understand it) A few of us were watching a movie, and the subject matter and sound was actually jarring to me as well. I was about to leave because it did not serve me, nor feel good to me. I turned to let them know, and J. was already muscle tightened, rocking, and had shut down part of his audio/hearing. We immediately turned off the movie, and it took him some time to balance his system out, which is what I believe stimming is. I think our world is actually filled with frequencies that are not in balance with our fantastic bodies. And I think many folks are being born that cannot, and will not deny this, and their bodies visibly can be seen seeking that balance. Our phycological/physical world is imbalanced, and for many folks that are not labeled with some alter behavior diagnosisi, they are using substances etc. trying to achieve some kind of, "relief"/ balance themselves. The world overlooks this, and actually is filled with things to encourage this, when actually it is the sign of a very "stressed" way of being. And these substances and behaviors do not sooth for long, before becoming harmful (hence a highly addicted society). it has a life of its own that often takes them out of "self" soothing, into a place of no control at all. All this to say.....your video was beautifully open and honest. I appreciate your sharing. And I think the more sharing of this, the more we will all understand ourselves. With or without the label of Autism. We are in a world that most experience as stressful, we should "all" be taking that seriously. Thanks again sweet lady.
Hello! I’m so glad I came across your channel! I also suffer with Pots and it is a challenge to garden but one step at a time...
thank you for sharing :) i have several stims like yours but have never been officially diagnosed
Welcome to the autism club Karlee!! 💜🎨 As you'll come to find out about the adult autism community, we are very welcoming of self-diagnosed humans. Even clinicians are starting to recognize that adults who have done their research oftne accurately diagnose themselves before seeking an "expert" diagnosis. 💜
@@LifeinBonnieland ❤️🧡💛💚💙💜
I stim and went through some similar stuff with not being diagnosed as a kid and having to hide them. I stim by spinning,toe walking,rocking flapping, galloping,jumping up and down,and many more things
Thank you so much! Your video has helped me understand my son and myself more. ❤️🌈
Nice😢😢😢😢😢😢😢😢😢
You are so beautiful😍