#disabledparent

[disabled-not-dead]

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Disability Isn’t Scary, Ableism Is

https://rdbl.co/3YnEMki

[brightlotusmoon]

From the Facebook page Autistic Women And Nonbinary Network.

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Such an important post!

*Caption below and image description by Nina Tame

“Disabled kids grow up to be disabled adults. If they’re getting questions now imagine dealing with that for the rest of your life.

Empower them with the choice to choose to answer if they want to but equally they can tell someone to fuuuuck right off or whatever the child equivalent of that is 🤷🏻‍♀️.

Checking in with your kid to see how they feel about being asked these questions. Maybe they don’t mind, maybe they like talking about it and that’s cool but also maybe they don’t so let’s give them options for that too.”

ID: seven slides of text that reads

Sharing a disabled kids medical details to anyone who asks, doesn’t normalise disability. It normalises disabled people being seen as medical curiosities.

You wouldn’t expect a nondisabled kid to share details of their last doctors appointment with a stranger on the street so why do we expect disabled kids to?

I’m disabled and so is one of my kids. A really lovely well meaning person with a toddler in tow asked my husband if it was ok to ask about my sons leg brace. My husband said no it wasn’t (never fancied him more).

It’s not because it’s a big shameful secret. It’s just what do you think it is? It’s quite obviously a device that helps him walk, you know like how glasses are a device to help you see. Do you need to interrupt our day for that?

With other kids and adults our kid knows that he can answer if he wants. He can make up a story if he wants. He can tell em “My Mum said I don’t have to answer that” if he wants and sometimes he just eye rolls and walks away.

Disabled kids shouldn’t have to be mini educators around their medical conditions. They should get the same privacy and autonomy as anyone else. They should just get to be kids.

Maybe your kid doesn’t mind having their medical details shared with strangers now but will they feel the same as a teen? As an adult? Explaining to them from a young age that their medical details aren’t public property and it’s their choice whether to share or not is one of the most empowering things you can do for them.

# DisabledParenting # DisabledAndProud

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https://m.facebook.com/story.php?story_fbid=pfbid02LpBYESxPKvDZJUb7Nw7r6nSkHm3jnEuuiPwYZtQfrciggcnwtkxj9bqvSji6HLJXl&id=100064856373594

[she-who-feels-pain]

Sat here crying about life again. Had to grow up too soon to fill the space of a disabled parent. It would have been so much easier to have an earlier diagnosis and be able to have filled that gap with the support that comes for child carers. As it is I did all that with no support for being a carer or a child. While I needed support studying I had to cook and clean because they were too scared of what the diagnosis would mean for them. I understand that. But it would have been so much easier to provide support if I was also being supported!

[disablediam]

#DisabledIAm #DisabledParent #DisabledWhileBlack Name: Eric Who represents disability? I represent a paralyzed single father. What do you want people to know about disability? I want people to know that you can still be and do whatever your heart desire no matter the challenge. Quitting is not an option. Who represents disability? I represent a paralyzed single father. What do you want people to know about disability? I want people to know that you can still be and do whatever your heart desire no matter the challenge. Quitting is not an option. https://www.instagram.com/p/CDXCFI7Jx_e/?igshid=1wtp8iio5fwk4

[lunasealab]

kaitmoonarts.com “Necessity is the Mother of invention.” - Plato Few #dutch homes have bathtubs, so we’ve made do. #Beppe brought a large tub for the twins and the littlest fits perfectly. He loves the water and it helps him calm down though he’s super sick. #grateful for water and family and my son. #blackandwhitephotography #abstractart #blackandwhitephoto #photography #autismawareness #mylife #momoffour #spoonie #fibrowarrior #disabledparent

[noodlenuts]

One of my greatest frustrations when it comes to representation and inclusion in picture books as a disabled person (and one that I know is shared by much of the disabled community) is how utterly WRONG most authors and publishers get books on disability. As well-intentioned as they are, they tend to centre disability in the most dreadfully cringeworthy ways instead of normalising it, and further othering us in the process. The flip side of this, however, is my absolute delight when I encounter a book that doesn't set out to be about disability AT ALL, yet almost accidentally serves to convey a message of inclusion, normalisation, etc. What a wonderful feeling that is!! And that is exactly how I felt upon reading Pippa Chorley's fantastic "Counting Sheep" (2019). Amidst Pippa's cleverly rhyming bedtime story about Sam who can't seem to fall asleep, the sheep she tries to count, and the one little guy who just can't make it over the fence, and Danny Deeptown's wonderfully humourous drawings, there is a message of ACCESSIBILITY that is UNMISTAKABLE. A gentle, funny lesson about how sometimes the simplest thing to do is put aside harebrained schemes and just MAKE SURE EVERYONE HAS ACCESS, including the members of our community with greater limitations. Plus, it's a really fun story. Looking forward to more from this duo!! And thanks so much to Pippa for the review copy, which is now a cherished part of my personal collection. ⚫ ⚫ ⚫ #noodlenutskidsbooks #countingsheep #pippachorley #dannydeeptown #bedtime #bedtimestory #sleepytime #sleepy #sleeptraining #accessibility #accessibilityforall #inclusion #disability #disabledkids #kidswithdisabilities #disabledparent #disabilityawareness #disabilityacceptance #disabledlife #accessibledesign #accessibilitymatters #raisingawareness #inclusivebooks https://www.instagram.com/p/B9pF7DzHmEU/?igshid=1n3f25jrjtkel

[toomuchbpd]

I felt this guilt. I spent 6 years of my childhood all but completely unbothered on my birthdays and Christmas or any other day that I voluntarily stopped speaking to my parents (who always tried their best and I have people come to me all the time and tell me how they are the nicest people on the planet) I didn't let myself think about how much my parents were hurting, hurting that I was gone, hurting that I didn't want to see them or hear from them but I was too worried about the disappointed and disapproval from my new family. It's disgusting to me that I still so often feel that way. My dad is such a good sweet man to have in my life and makes a great grandpa and yet.. I've gone years without speaking to my foster parents and I hurt over THEM, More often than not, not just on holidays- most days. I can only imagine it's their approval I want because theirs is the only approval I've ever had to fight for. And I'm soooo fucking angry that I've had to. I'm so damn angry that they are better off without me. I am so fucking pissed off that they adopted me and then gave up. It is gut-wretching to me that my coping mechanisms make me "too much" when I know DAMN well that I'm really not that bad. I live and breathhhheee in pain, more often than not. I feel overwhelmingly guilty that I've hardly ever felt that same guilt towards my first parents ESPECIALLY as sweet and loving but incapable they were. It's that anger and pain that makes me sick to my stomach every single time I see one of my other foster siblings pining for their attention. Bending over backwards for SCRAPS of love. To crave the acceptance and the participation of these people only to be let down more often than not. What disgusts me the most is the less of it they give the more we want it. For the last two years I've forced myself to the best of my ability to stay away. The pain and constant disappointments crushed me so deeply so often that I've all but accepted a milder constant pain is a better alternative. What I want and what I can have are two completely different things. I choke that down most days. The worst tho, the worst is not being able to complain because I make the choice not to see them even tho it pains me. I make the choice to take the lesser pain in exchange I have to suffer in silence. Come to think of it If I was enduring the rollercoaster of there ever coming and going "love" and effort I would also have to suffer in silence. The best way to lose a narcissist is to tell them what they are doing is wrong or hurtful in any sort of way

[mommyswheelchair-blog]

An Intro To Your Medically Unblessed Blogger

My name is Alyssa and I am a 24 year old stay at home mommy to a three year old girl, L, and a super cute doggo, Otis. We live in the tundra of Minnesota with my wonderful boyfriend/L’s daddy. I am a big fan of reading, writing, cooking, rock music, makeup, tooling around outside in my chair, and making learning fun for my daughter.

I was born with spina bifida (lipomeningomyelocele). I use a forearm crutch and carbon fiber AFO leg braces for short walking distances like around the house, but when I go out I normally use a wheelchair with a Smart Drive MX2. They are some pretty awesome and expensive gadgets. I have had over 20 surgeries relating to my spina bifida on my spinal cord (multiple detetherings), bladder, and feet. It was a long road to adulthood and I am left with intense chronic pain in my back, legs, and hips.

I was surprised by two pink lines when I was 20 and my pregnancy went smoothly despite them being worried about how my spina bifida would affect it. I have a healthy and happy baby girl! She turned three in February and this September has been our first month of a Montessori based preschool program at home. I am happy to answer any questions other adults with disabilities may have about pregnancy with a disability as well as parenting with a disability. I found extremely few resources while I was pregnant and would be happy to answer any questions anyone has so they don’t feel as lost as I did!

Last December (2016), I was diagnosed with a neuroendocrine cancer. I had a tumor removed that had been growing for years, maybe even while I was pregnant. I had a hemicolectomy immediately after Christmas and 3 of my lymph nodes were still cancerous. But! My scans have been clear for eight months! I do not have to currently progress with chemo or hormone therapies! I am very young with this diagnosis, though, and we are unsure what the future holds. One day at a time. I have been following a stricter healthy diet following my cancer diagnosis. I stick to mainly a plant based diet as my system has a difficult time digesting meat and has not yet bounced back since my surgery. I deal with daily nausea and diarrhea (managed by medication, mostly) that may take years to balance out from such a large part of my intestines being removed.

This month I was informed I have arthritis in my left knee and hip. Currently I am working on a PT program to help correct my left knee bend and turning in of my foot. I have never worked on my walking mechanics in PT before and it will be a long road and has so far been painful, but worth it. I see the results of my stretches and exercises every week. My posture has improved and I am strengthening muscles in my left leg that I have never used before. I talk a bit about my PT to hold myself accountable to a program that causes so much ache, but has a positive pay out.

And that’s it, folks! That’s most of me and my every day life. I welcome most questions people may have about my disability or cancer diagnosis. Thanks for reading just a brief snippet of my medical history to get to know what makes me me a little better before I start posting more about my every day, my diet, light exercises for those with disabilities, and fun ideas for educational activities I do with L!

[brightorangerain]

@carrieannlucas Carrie Ann Lucas died when her insurance company refused to cover medical equipment that she really needed. She was an amazing advocate for disability rights and for parental rights of disabled parents. #carrieannlucas #disabledlife #actuallydisabled #disabled #disabilities #disability #ableistlanguage #ableism #ableist #quotes #disabledparents https://www.instagram.com/brightorangerain/p/Bu7f2pLBF5w/?utm_source=ig_tumblr_share&igshid=1pyk9yx7dhawn

[panik138]

Forever proud to be this "lil doof nugget's" (our lil nickname😂) momma 👫🌹♿💕 #happymothersday #bff4ever #disabledmom #disabledparenting #somartx #throwback #disabled

[paprikajewellery]

What pushes you on when you don’t have boundless energy? New Blog: Confessions of a bed-bound mum Surviving Without Energy! When I say bed-bound I mean existing in bed 80-85% of the time, because I don’t have boundless energy. I often get asked how I cope, especially keeping positive, so I thought I’d tell you what keeps me going.. I’m surviving and am able to be a good mum because of my support network. Joel and my boys make me smile every day, especially when I have energy to get downstairs, My friends keep my spirits up and my Carers make sure I preserve energy for mum duties. This emotional support helps me cope. I was shocked to be told by a social worker that I needed physical care idea as a 36 year old mum, but I did need someone to tell me I didn’t have boundless energy. As a youngish (in care terms 🙈) mum. I needed consistency, friendliness and someone bossy enough to tell me off. We had a few mismatches because I'm not your usual care client. More about that in the Blog. The lady who runs the agency I use now is a close friend and she has found perfect matches. They make sure I giggle, shower/dress safely and eat etc. They ensure I’m not using up energy I don’t have, so I can be a better mum. But there are some funny stories about life in the Care Lane! Check it out from my bio! What helps you cope? . . . #strengthoftears #paprikajewellery #carers #carersareamazing #bedbound #mumbloggeruk #chronicblogger #chronicblogs #mumwithsons #energyiseverything #energyislife #spoonielife #spoonieblogger #spoonieliving #spooniefamily #chronicpainawareness #iihwarrior #invisibleillnessawareness #chronicpain #chronicinsta #chronicillnesswarriors #disabilitysupport #youngandchronic #chronicblogger #chronicpainlifestyle #disabledparenting #chronicallyyoung — view on Instagram https://ift.tt/2HHxD7X

[errantdreaming-blog]

Four - something to remember

me "i feel like im letting him down and saxton" G "You aren't If there was anything I could say to convince you of that, well then your parental instincts probably wouldn't be functioning properly Feeling like that shows how much you care for them More than is reasonable, if you where reasonable about this you would know that none of this is your fault And it's exactly that kind of care that tells me that you won't let them down." Things I needed to hear today.

[disablediam]

#DisabledIAM #Motherhood #DisabledParent Name: Brittany King (@britreneek) Who represents disability? People who represent disability are those brave enough to claim their pride in the definition! What do you want people to know about disability? I want people to know that disability is not a disadvantage in life. How can #DisabledIAm help get your message out? Sharing our stories for the world to know is how #DisabledIAm will spread our message. https://www.instagram.com/p/CCwxafrpama/?igshid=m5yf1k3z6tkd

[lunasealab]

#disability and #accesibility are always difficult. Accessibility at airports is even more challenging. If you are a #disabledparent and/or have a #disabled child and need assistance it may take you over a week, 6 phone calls, and a text convo with the airline plus a cascade of tweets to TSA, the airline, the airport and a disability service support organization (which was actually the most useless) before you are sure you can go through security alone with 4 kids without catastrophe. I'm still not convinced we'll be supported by all we meet, but remarkably TSA CARES was amazingly supportive and helpful. Hopefully their staff at terminal will be as eager to assist. "Heartland helps" was a joke and even told me they "don't help parents traveling with kids" disabled or not, it seems. KLM wasn't much better. They just asked me what kind of wheelchair I was bringing. 🙄🙄🙄 and told me they couldn't help in any other way. Including not helping me sit by my kids. 😬 #hopingforamiracle #ableism #disabledparent #norestforthewicked #leavingonajetplane #fibrowarrior #spoonielife #ableismawareness #disabilityawareness #flyingwhiledisabled #feministselfie #momlife

[lunasealab]

A little overwhelmed. Grandfather is in hospital 2200 miles away (it's not looking great,) I'm distant from friends that are ill and far away. Family and loved ones, hearts failing, body's failing, minds failing, loves falling and loves ending and lives, determined lives, pushing on through all the disintegration. So much to feel. I'm failing too. My body weak and flaring. I'm barely keeping it together with sealing wax and kite strings (metaphorically speaking.) I'm leaving in about a month. Traveling with all four of my kids to their grandparents abroad. I'm terrified. Terrified that my grandfather will die and I will not see him again before I leave, that something will break me on the way, that I won't make it out alive (I mean none of us do, but still.) Oceans to cross. Children to keep safe. Life marching forward as death sits in wait. I have good people supporting me but my whole life is in flux. I feel disoriented, as if I've got off the elevator on the wrong side, or I got off at my stop but it wasn't really there anymore. Same street, different dimension. Welcome to the #newnormal #chaos #fibromyalgia #fibromyalgiawarrior #writersofig #iamwriting #photography #eyes #chronicpain #shadows #chronicillness #death #life #loss #disabledparent