Archive for category Caregivers

[WEB PAGE] What Life Is Like With a Brain Injury

An acquaintance recently asked my husband if he thought I was “faking” my brain injury. I thought this remark hit a bit higher on the offensive meter than the typical “she looks fine” and “I forget words sometimes too, that’s just old age.” This one digs sharply into the pit of my stomach. I don’t fault others for not understanding. Everyone has their own problems, and there’s not a lot of awareness about post-concussion syndrome and traumatic brain injury. Even my own husband, who patiently takes care of me day after day, struggles to fully grasp what it’s like. I look “normal” on the outside. I’m like a duck sitting on a pond; no one else can see my feet frantically paddling just to stay afloat.

The past year of my life has been the most challenging yet, and while I have often been treated with kindness and compassion, I have also felt very alone on my road to recovery. The other parents who see me drop my kid off at school don’t know I’m wearing ear plugs to drown out the unbearable noise; they don’t know that I can’t drive on the highway because I panic at speeds above 60 mph. My neighbors who see me walk the dogs can’t tell that I lose my “ish” whenever the leashes get twisted. Friends who saw my post of my daughter’s breakdancing performance have no idea that I spent four days in bed afterward from the over-stimulation of my brain. Even readers of my blog may not know that it takes me much longer than it should to write an article because screen time gives me headaches, and my brain now struggles with sentence structure, word recall and spelling.

So here is my attempt at describing my brain injury, what it feels like to have the universe tell you that you can’t do anything you enjoy, and what it’s like to fear you’ll never again be able rejoin the outside world. For my brain-injured readers, I hope you feel a little less alone.

My brain injury is:

Like waking up one day to find you are suddenly a complete stranger in your body. Like your brain has been taken over by a tiny gremlin who is tripping wires and setting little fires.

Forgetting day after day after day when you turn the tea kettle on. Feeling perplexed each time you try to open the tea box. Leaving your sink water running after you get distracted by something else. Spooning salsa into your coffee. The few seconds after your timer goes off and you can’t remember what you set the timer for in the first place.

Calling your daughter by your dog’s name and not being able to recall the word “dog.” Jumbled sentences and made-up words. Stuttering or repeating the first word of a sentence like a broken record because you can’t find the next word when you are tired and overwhelmed.

Never being able to finish a task all at once. Cleaning, baking, emails, bills, personal grooming: all unfinished. Every task must be done in steps because there’s never enough brain energy. No longer being able to push through the exhaustion to finish a project, or else you will have symptoms for days.

Wearing your pajamas to the doctor because you can’t be bothered to get dressed. Can’t remember the last time you flossed.

A thought unfinished, a word unsaid. A blank space where the memory should be. You go to grab it, and it’s just not there. Not remembering where you parked your car or what you did yesterday, momentarily not recognizing your surroundings, forgetting to eat. Someone reminds you of something you forgot and there’s no spark of recollection.

The sense that you are “losing your mind,” a glimpse at what it’s like to have dementia. Feeling like you are sleepwalking through each day. Can’t think, can’t reason, can’t be logical or rational.

Time contracts and expands. You lose track of time, can’t calculate hours. You struggle to figure out how to structure your day, and it feels so overwhelming when you have more than two things you must do.

Vivid dreams and restless sleep. Panic rising before your sleep medicine kicks in. Dreams of getting lost and then not being able to remember your husband’s phone number. Dreams that people confuse your brain injury for mental illness. Recurrent dreams of wild animals attacking.

Always being in fight-or-flight mode; your sympathetic nervous system is on overdrive. Prey looking out for a predator. What was that movement in your peripheral vision? Will I slip and fall on the stairs? You imagine a tragic car accident while you’re driving. An unexpected noise makes you jump out of your skin.

You can’t quiet your mind and turn off the mental chatter. You’re easily distracted, concentration is impaired, you can no longer follow conversations. The grocery store is a nightmare with all of the lights, noise and endless choices.

A black empty feeling on the really bad symptom days, like someone scribbled out your brain with a black marker. Offline, no spark, unable to process information. There’s absolutely nothing left. The world has tilted and you are slipping off the edge.

My brain injury symptoms are:

A multitude of headaches, all day, every day, sometimes in the middle of the night. Stabbing, pulsing, electrical snapping, brain squeezing. In the sinuses, across the forehead, cheekbone and the back of the skull. Migraines and headache hangovers. Anything that can give you a headache does. Your brain always feels like a pressure cooker, a helium balloon ready to pop.

Blurry vision, your eyes won’t focus at the same distance. Pain when you look up, double vision when you look down. Words float in and out of the page so you can’t read for more than a few minutes. Blinding lights with halos everywhere, you have to squint and shield your eyes even from the moon. No more driving at night, you keep the lights in the house down low.

Ringing in your ears, high-pitched screeching, sometimes a deep whistle like a train horn. A moment that you lose hearing in one ear when the whistling becomes too loud. The sound of your blood pulsing in your ear with your heart beat, you just want silence.

Sound hurts your head, gouges your brain. Your brain can’t filter out the background noise that just gets louder and louder. The sound of your toothbrush charging hurts your head, your child’s footsteps are stomping directly on your brain. You can’t hear anyone talking when the fan is on. No more music, no more public places. You wear ear plugs inside your house because you can’t handle the dogs barking or more than one person talking.

Wearing sunglasses to watch a TV show with your child, closing your eyes half the time because the movement and colors are too overwhelming. Too much movement disorients you and makes you dizzy. Bending over hurts your head and you see stars.

Bumping into walls, missing your lip when you drink. Your coordination is not the same anymore.

Mental exhaustion — the kind where you can’t form complete sentences, can’t remember what you started out to do, your eyes sting and burn, and your head feels too heavy to carry.

Too loud, too fast, too bright, too much. Stop talking, stop moving, turn off the lights, enough. All the world, just shut the f*$% up! Mornings, days, evenings in your bedroom with the door shut, eye mask on and ear plugs in. Desperately needing to block out the world until the symptoms subside. You did too much, you tried too soon. You can’t handle it, you’re not ready. It’s only been a year.

A brain injury is relentless emotional turmoil, a constant internal tug of war.

It is denial that your recovery will take that long or that you may have lingering symptoms for the rest of your life.

It is self-doubt and self-judgment. The shame of being broken and weak. You think, “I’m not smart anymore, I’m an emotional disaster, I don’t contribute anything. Why me? Why did I have to go snowboarding that day? Why didn’t I take better care of myself before this?”

A brain injury is perpetual conflicting emotions. You want to go, but you want to stay; you want to be with someone, but you want to be alone; you want to keep trying, but you want to give up. You are so tired of doing nothing yet you don’t feel like doing anything.

An everlasting feeling of inertia. The reluctance to move; you think, “Just let me lay here for another minute.” Irritation that you have to stop a task because you need to rest before the symptoms come.

So much uncontrolled anxiety, the lump in your stomach hardening into a rock, the squeezing in your throat. Heart pounding. Hands trembling.

Incessantly worrying about the bills. Not knowing if you’ll ever be able to work again. You can’t imagine being able to get through an eight-hour workday.

Fear. Gripping, intense, paralyzing fear. Always some level of underlying fear. Fear of falling, fear of a car accident, hitting your head, never getting better. Fear of leaving the house, of doing something you used to do because it might increase your symptoms. Fear this is as good as it’s going to get.

A brain injury is that flicker of irritability rising at the slightest provocation, an imprudent outburst toward your kid. Pent-up rage, frustration with your new limitations. Wanting to break something, but you don’t have the energy to clean it up. Wanting to scream or punch something but it hurts your head.

Feeling fragile, like something will easily break you. Feeling volatile, like a volcano on the verge of erupting. Unable to tolerate any stress, your meltdowns are frequent.

A brain injury is loss. Loss of your old self, your life expectations, your career, your goals and your hobbies. Loss of your freedom and independence.

It is inconsolable grief. Endless tears. Hopelessness and despair. Sometimes going to bed at night and wishing you wouldn’t wake up in the morning.

A brain injury is altered relationships, isolation and lost social skills.

It is the never-ending guilt of being a burden on your family, for causing them pain, for requiring sacrifices, for scaring them on the days you can no longer “hold it together.”

Your husband becomes your caretaker, you become his patient. You are fragile and dependent. You are no longer the lioness; your kid worries about you and wants to protect you. They dutifully run your errands; they rightfully lose their patience. Everyone is on edge.

A brain injury is missing your daughter when she’s away, only to find you are too exhausted to be around her when she gets home, and you shamefully count the minutes until her bedtime.

It is feeling disconnected from your family. They often leave you behind because they have to. They want to be with you, but they want the “old” you. You can no longer do the things you used to do to bond with them. You can’t go on date nights or anniversary trips with your husband. You can’t read to your daughter, and you miss her dance performances, play dates and doctors’ appointments.

You wonder if you’ll ever be able to take your daughter on a girls trip or to see a movie. Anticipate that you will never see another concert. Realize you will never go skiing, sledding or ice skating with your kid again.

No more fun. No more wine with dinner, no Friday night beers. No restaurants, family gatherings or parties. No reading books, no watching TV. No more dancing, yoga, music or theater.

A brain injury is isolation from the world; you’ve become a recluse. You leave the house because you are going stir-crazy, only to feel buds of panic rise as you want to immediately return home.

Friends no longer invite you to hang out. They don’t even check on you anymore. It’s long past the time when they think you should have fully recovered. You miss being social but think, “What’s the point?” It’s too much stimulation anyway. Your brain injury is like a bad ex: you can’t talk about anything else, and they don’t want to hear it anymore.

You discover a newfound social awkwardness. You can’t follow conversations because you get distracted by your symptoms or an unfamiliar word or an external stimulus. You can’t maintain eye contact anymore. You no longer have a prefrontal filter; you laugh when you shouldn’t, you swear when it’s inappropriate and you interrupt. You’ve become self-conscious and have social anxiety. You are inflexible; a last minute change in plans feels catastrophic, a cancellation devastating.

A brain injury is profound loneliness you’ve never before experienced. No one can really understand what you are going through. You desperately want to be acknowledged, heard, understood — even when you “don’t make sense.”

A brain injury is exhausting efforts at trying to recover when there’s no protocol to follow, no guarantee of healing.

Recovery happens in waves, sharp dips and long plateaus. Progress is measured in years. You may never fully recover.

A brain injury is appointment after appointment. Neurologist, chiropractor, craniosacral therapist, acupuncturist, naturopath, hyperbaric oxygen clinic, trauma counselor, vision therapist, nutritionist. You don’t have the energy to go to any of them.

Infrared light therapy, vestibular therapy, vision therapy homework, dry needling, meditation, brain exercises to stimulate neuroplasticity. Special glasses with eye lights, bone-conducting headphones, eye charts taped on the walls around the house. The different parts of your brain like an orchestra that’s out of tune.

Medications and supplements, pills and powders, sprays and injections. Gagging on healthy brain foods. Anything to heal. Desperate to tame.

Rest, rest; always more rest. Hour after hour of laying in silence. You are bored. Your body betrays your brain when it needs to rest. You resist. When your eyelids refuse to stay shut, you stare at the ceiling, listening to the tick of the clock and the hum of the furnace. Time stands still and then suddenly slips away.

A brain injury is transformation, a time of deep reflection and a new beginning.

A constant struggle to keep going. To not sink. To choose life after brain injury.

It is allowing yourself the time and space and rest you need to heal.

Countless hours spent contemplating your purpose and what crucial life changes you should make.

It is relinquishing control. Letting go of behaviors that didn’t actually serve you, and slowing down so you can pay attention to what really matters.

Cultivating gratitude and counting your blessings. Practicing self-compassion and self-acceptance. Forgiving your mistakes, pardoning your past. Finding a glimmer of humor beneath the dark shadows.

A brain injury is celebrating the smallest of victories. Finding your strength and becoming a warrior. An upheaval of your whole life, and then you climb off the edge and pave a new path.

It is waking up one day and realizing you are no longer a stranger in your life.

Follow this journey on Better Brained.

Source: https://themighty.com/2019/11/what-life-is-like-with-a-brain-injury/?fbclid=IwAR1dX5czosk0uIz2WBThp9ay5zWAF6YFQazieZkpH655q2_9VTjztsYVpQI

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[BLOG POST] Life after a Brain Injury: Acknowledging your family & friends efforts

Life after a Brain Injury: Acknowledging your family & friends efforts

One of the biggest stressors that most brain injury survivors talk about is how relations between them and their circle of friends and family starts to show cracks. I have brought this up before in Breakdown of relationships after a brain injury and Advice for family of a recent TBI survivor. But there’s another important part that I want to take the time to address to try to help those cracks heal.

Previously I have explained how within a short period of time after my car accident, which caused my traumatic brain injury, my Dad was diagnosed with Alzheimer’s. As my Mum had sadly passed away just weeks after my accident, I needed to help Dad whilst he continued to try to live at home. Therefore, I was in the position of being the person who needed to be cared for, whilst supporting someone else who was also having cognitive difficulties. I hope you can see that I was in a position of getting a sense of what it’s like for a brain injury patient as well as the person who is trying to help them.

Forgive me; I warn you that you probably won’t like what I’m about to say.

Firstly, know that I am not shaming brain injury survivors for the issues that develop in their personal relationships. However, as Newton said in his third law of motion, “Every action has an equal and opposite reaction.” Now I know that’s about physics, but it can still relate to many parts of life. There are consequences for everything we do, and that includes how people feel as a result of our actions, even if we didn’t intend to affect them.

The sheer worry of what Dad was or wasn’t doing was turning me into a nervous wreck. I did my best not to show him, but then it meant it sometimes came out in frustration. I would be short with him and be overly blunt and direct with him about his errors. But he didn’t realise that I would worry 24/7, whether I was with him or not. “Out of sight, out of mind” didn’t come into it for me. That left me on the verge of panic every waking second (and there were a lot because I couldn’t sleep at all!).

I know that at the time, I didn’t appreciate how my partner James was going through the same thing with me.

There were several times that I fell down the stairs when James was at work. Thankfully my injuries were no worse than bruises and the odd strained muscle. But that meant he would be trying to hold down a stressful job whilst wondering what mayhem I was getting myself into. Thinking back, now I can identify times where I lacked the insight to see why my behaviour was so difficult to deal with, and I’m certain there’s 1000’s more that I just don’t remember at all.

The short of it is this: We don’t want to be a burden on our loved ones, but the truth is we have become an added strain on their lives. It’s nobodies fault, and I’m not suggesting that survivors can choose to behave differently. I know that many of us struggle to appreciate how the situation is affecting our loved ones because we just don’t have enough cognitive capacity left to see it.

They want to be acknowledged, but we just don’t see their needs or are unable to express it in the way they need.

If you’ve not seen what I mean by not being able to see their needs, or think that can’t apply to you I’ve got a different type of example that might hit the mark. If you’ve ever had a review with your manager that went worse than you were expecting, you’ll know want I’m talking about. I remember when I was trying to make my mark in my early twenties, and I worked hard every day. So, I would be perplexed when in a review, my manager would be able to pick out so many errors which I had thought were minor at the time. And then as they explained the knock-on effects of these “minor” errors, it would slowly dawn on me how important these events actually were. These meetings were horrible, and I would be annoyed at myself for not seeing the consequences first. If I’d been able to acknowledge the problem first, I could have doused the flames, thus reducing the dressing down I got.

Therefore, I understand that it’s hard to recognise something that you can’t see happening. But we know our family and friends are trying. We can admit that it’s not an ideal situation for anyone involved.

Just like it’s heart-warming when someone gives you a present just because “I saw this and thought of you”, random acts to remind those close to you that you appreciate them can go a long way.

Here are some suggestions that could help them feel acknowledged that don’t cost money:

  • Send them an email just saying thank you for all they do. If you want to make it extra fancy, you could send them an ecard and customise it. Smilebox.com lets you do this for free and they have loads of templates that you can use to make it easy.
  • Write a little message on a post-it note and leave it somewhere that they will come across later. The inside of the front door or the bathroom mirror are always a winner. Keep it simple, “I love you” tends to go down well.
  • Get your local radio station to give them a shout out, so everyone knows what a star they really are.
  • Post it on Facebook/Twitter/Instagram or whichever social network you like best, saying why you think so much of them.

Dad had an even simpler solution which was precisely what I needed.

There were times that I didn’t know how to continue when I was doing my best for Dad. I would cry saying to myself “I just can’t do any more than I do, even if it’s not enough.” But I did that only in private, so Dad never saw how close to the edge I was. Then it would be during a conversation with one of his life–long friends, or my sister in America that I would find that I did have the strength to continue… They would tell me how Dad always told them “Without Michelle I don’t know where I would be.” The honesty in that statement from a very proud man who was desperately trying to protect his independence was all I needed to know. The fact that he was telling others as well as me proved he wasn’t just trying to say the right thing.

Love is unconditional, but just like a parent needs to hear their child say thank you and know that their efforts to do the best for their children are recognised, the same goes for those who are trying to support us through a brain injury.

Disclaimer 

Nothing in this blog should be taken as providing medical advice or recommendations. Please always consult your doctor for medical advice and before taking any medication or supplement. Any opinions expressed in this article are of the author and not CFG Law Limited. 

Source: https://www.cfglaw.co.uk/blog/life-after-a-brain-injury-acknowledging-your-family-and-friends-efforts?fbclid=IwAR13zAr8Q7xyETUO9h0a-e5JrH9FZaMHJmzT84QkmiSlo35AjXVDEnPcRpI

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[Booklet] Recovering from Mild Traumatic Brain Injury/Concussion – PDF File

Guide for Patients and Their Families

This booklet provides a few answers to questions commonly asked by patients and family members following a mild traumatic brain injury (TBI) which is also called a concussion. It describes some of the problems that people may experience after a mild TBI and offers some tips on coping with these problems. As you read this booklet, keep in mind that everyone recovers a little bit differently. Everyone improves after a mild TBI, and most people recover completely in time. We hope that you find this booklet helpful.[…]

Download PDF File

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[Abstract] Future Aspirations of Young Women With Disabilities: An Examination of Social Cognitive Career Theory

Abstract

Young women with disabilities face multiple barriers that limit their career pathways. Little research has been conducted to examine how cognitive constructs of career self-efficacy and outcome expectations contribute to their future aspirations. This study examined direct relationships between career self-efficacy and outcome expectations on future aspirations, mediating effects of autonomy and self-realization on these relationships, and moderating effects of mental health on these links for young women with disabilities. Although existing research on social cognitive career theory has focused on career self-efficacy, results from this study indicated that outcome expectations might have an even stronger influence on future aspirations. Mental health barriers negatively impact future aspirations of the study’s sample. Limitations and implications for research and practice were discussed.

Source: https://journals.sagepub.com/doi/abs/10.1177/2165143420920168?journalCode=cdeb

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[COVID-19 Resource] ENGAGE… Virtual Community Life Engagement – PDF File

By Jennifer Sulewski, PhD

Abstract

This brief applies the four guideposts for Community Life Engagement to identifying virtual opportunities for interaction and engagement during the COVID-19 epidemic. People have been asked to stay at home as much as possible and practice social distancing (staying at least six feet apart from one another). People with intellectual and developmental disabilities are no exception. There are a lot more resources and opportunities available online these days. Everything from live performances, to museum exhibits, to small gatherings of friends is moving to platforms like Zoom, Facebook, and YouTube. But with all these opportunities, the dilemma is how to choose which to access. This brief shares recommendations for making that choice by applying these four guideposts: (1) individualize supports for each person, (2) promote community membership and contribution, (3) use human and social capital to decrease dependence on paid supports, and (4) ensure that supports are outcome-oriented and regularly monitored.

Download article in Full Text (PDF)

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[BLOG POST] An Overwhelmed Inspiration – BrainLine

Nicole Bingaman, Caregiver, March 9, 2020

Nicole Bingaman in profile

Someone recently told me these kind words, “You inspire me.” I looked in the mirror feeling anything but inspiring. 

I then recalled a recent memory. A few weeks before I was participating in a yoga class where I was reminded to bring deeper awareness to myself. The teacher prompted us to slow down and observe what was happening in our minds and bodies. So I did. I sat on my mat listening to the sound of my own thoughts. And I saw something clearly. As strange as this might sound a word appeared to me in large, bold letters surrounded by fiery flames.

The word was OVERWHELMED.

The second I saw the word I also felt the word within. My chest filled with an unfamiliar and annoying fluttering as if a million butterflies had been released in the space above my rapidly beating heart. I understood myself to be exceedingly anxious and physically worried. My body held the sensation that comes when you know someone is about to deliver impactful or extremely important news. This was not a positive sensation. It wasn’t the same as fear, but it was similar.

I knew I was in a safe space in the studio. I understood this to be an emotional response. It was something I could address later. So I continued the practice.

Over the next few days, I shared my observances with some trusted friends. I admitted feeling overwhelmed.  I started to focus on exploring areas in which I might be able to pull back, or lighten my load. Then another thought occurred. It was the question of why it is that I keep so busy? Is my busyness intentional? Is this the natural path of being a caregiver who works full-time, teaches yoga part time and speaks, writes and advocates about traumatic brain injury? Or was this a mixture of all of these things?

Being busy and doing important things is not bad, but experiencing burnout or feeling as if your mind never shuts off is unhealthy. Especially for a caregiver.

This goes back to the concept of honoring our survivor, our family and our friendships while also remembering to honor another important person…our self. Practicing self-care often gets pushed aside. And that is dangerous.

While half asleep on on Sunday around a week later I began running through what the upcoming week was going to look like. My mind went from my 9-5 job and expectations, back to my home and those expectations, and then to the extra-curricular activities and those expectations. My head spun with lists, dates and information. Organizing my thoughts felt difficult. I was keenly aware of the busyness that would continue over the next few days and weeks.

As I considered my thoughts carefully during my waking hours I had to explore ways to take better care of myself. I listed practical solutions that seemed to ease some of the pressure I was experiencing.

  1. Taking a good look at my calendar. Were there one or two things I could eliminate or postpone? Could I admit to myself perhaps I had overscheduled? In the future can I be more mindful of the things I commit to?
  2. Exploring the idea of hiring a companion to spend a few hours with Taylor on the weekends, giving us some free time. This service is not inexpensive, but giving both my husband and I a break when we are NOT at work is important.
  3. Making sure I continue the areas of self-care that are working. A big one for me is yoga. I must make sure to schedule not only teaching time, but also times when I can go to class. This is a priority, because I know the results yield peace of mind.
  4. I was thinking about the last time I had a getaway. I think it was May of 2018. I need to work in events and times away that I can look forward to. Having to look forward to is important. It is sort of like trusting a long winter will be followed by a bright spring. This one is harder to access, but something I am working on.
  5. This may seem strange but I captured a photo of myself in the midst of a sad and overwhelmed moment. I remember a teaching that has really come to life for me. And it is this, “I may feel broken, but I am whole.” This doesn’t mean I don’t give space for my feelings. The photo is a reminder of how hard things can get and feel, and to work to create more spaces of happiness and joy, than the deep sadness and overwhelming emotions that come with caregiving. The photo is a tangible reminder to throw myself a life preserver, before I start to feel as if I am drowning.
  6. Finally, these seem kind of obvious but when we are worn down sometimes we forget to eat healthy, rest well, exercise, step in the sunshine and step away from electronics daily. Going back to the basics of self-care is often the best place to start.

I want to remind you our feelings as caregivers, are not “good” or “bad”. They are simply our feelings. We do not need to have guilt about feeling sad, overwhelmed, broken, stressed out or needing some space. We can acknowledge our emotions and if they feel painful to us we can ask how to work on easing our burden, and giving ourselves opportunities to feel better. Labels for emotions add more to the caregiving plate. This is all a work in progress, I am a work in progress (much like my survivor).

If you are a caregiver reading this, I want to remind you…you are not alone. On your worst days. At your hardest moments. On your best days. When you are a shining star. You have a family of other caregivers who understand and care about you.

Source: https://www.brainline.org/blog/permission-tell-truth/overwhelmed-inspiration?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+NicoleBingamanBlog+%28Nicole%27s+Blog+%7C+Permission+to+Tell+the+Truth%29

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[BLOG POST] Living with a brain injury in an ableist society – #jumbledbrain

Living with a brain injury in an ableist society

I don’t like trending buzzwords much as they always leave a sour taste in my mouth where it feels like people are just being quick to jump on the latest bandwagon. That’s why I’ve been reluctant to bring up the subject of how much of the modern world is still behaving as an ableist society…. that is until now. Yes I’ve spoken before in Living with invisible disability, brain injury  about how having an invisible disability can mean both able bodied and disabled people can misjudge you, but the other day I witnessed something that proved to me how far some people still have to come in their understanding of those for are not like them. 

Trigger warning: This level of ignorance I’m about to describe is likely to upset some. 

I’m very active on Twitter and often tweet about brain injury and many other forms of chronic illness (if you don’t already you can follow me via @michelle_munt.)  The other day I retweeted an announcement of the company that a guest blog for that the latest blog post by another of their guest bloggers was now available to read. The blogger, Lauren has a spinal injury and so we blog about different things but as CFG Law is a law firm for personal injury they are keen to highlight how the disabled community can cope with their injuries. The tweet said: “Laurens latest blog with @CfgLaw is now available and Laurens experience of care at home… #sci #careathome #cfglaw”.

Laurens spinal injury came from being hit by a van 11 years ago as she crossed the road at the wrong time. She was distracted and unfortunately stepped out and the driver couldn’t stop in time. The accident left her completely paralysed, but since 2016 she has set up and runs the charity Road Safety Talks Charity to raise awareness and better educate others.  I haven’t had the opportunity to meet Lauren myself, but she sounds pretty awesome to me! I can’t begin to imagine the amount of work it takes to set up a charity. She also is a motivational speaker, so I take my hat off to her.

One particular response to this made me see the ableist society at its worst.

Now the tweet has been taken down so I can’t quote it, but one lady put “Rest in peace whether he recovered or not.” WTF? I did ask her what she meant by “rest in peace”, pointing out that Lauren is a female blogger, ie alive and SHE has a brain which she is putting to good us, but I never got a response.

Clearly this person didn’t read the article so didn’t understand Laurens situation, and this person isn’t one of my followers so I don’t what her situation is either. But what shocked me about this was that she seemed to be implying that Lauren might as well be dead because of her disability. I had understood that some people may well think like this, particularly if they haven’t ever met someone who is doing so well in life despite their disability, but I never thought anyone would dare share this ignorant view so publicly. I mean it’s Twitter! Hello, now we all know how stupid you are!

This got me thinking about examples of ableism I’ve experienced that I might have overlooked.

Again on Twitter (sorry Twitter I mostly have a very positive experience of you and find the community very supportive so I don’t mean to make you look bad) a “well meaning” health coach responded to a tweet about my brain fog. I did mention I have a brain injury (because I do mention it constantly) but she still told me that if I changed my diet and lifestyle I could solve my problems, including brain fog. Symptoms like this, she told me, are just a reflection of the imbalance that I had created within my body.

Now don’t get me wrong, I do realise a healthy diet and active lifestyle can help, I’ve even advocated for this myself.  But I have a brain injury, I have to fight against the imbalance in me every day! The structure of my brain is difference and so are the chemicals in it. This also gave my hypothyroidism and so my hormone levels are not where they need to be. But there isn’t a formula which I can follow everyday to correct these issues. Everyday is different, some days I’m doing well, and others I’m not. Living with a brain injury isn’t as simple as doing exercise and eating the right foods to remove symptoms such as brain fog. 

As I didn’t have the energy for an argument, and because I knew she meant it in the nicest possible way, I just let it go. But actually I was hurt at the suggestion that my symptoms were my fault. You could say that as I was “complaining” about my brain fog she was trying to offer a solution, but as a fellow coach and blogger I don’t accept this. I’m a blogger who uses her experiences to offer a voice for other brain injury survivors and raise awareness, I’m not actually asking for a solution. Of course I am grateful of any new information others can offer, but simply blaming me for my struggles is not helpful. What’s more, it’s not even like we discussed my lifestyle for her to be able to identify what I might be doing wrong, it was just “obvious” to her that I MUST be doing it wrong to be experiencing these symptoms.

And then there was the guy who said “what, so people actually read your blog about brain injury?”

Ugh, honestly it was only because this guys behaviour made me think that he might either been damaged or was on the autistic spectrum that I didn’t roll my eyes at him. Yes, people read it. Just because you’re not interested, assume it’s boring, has no value or whatever, doesn’t mean that’s how the whole world feels. The idea that writing about how my life has changed due to my brain injury must have struck him as self centred. Why would anyone want to hear me droning on about it? The funniest part about this conversation was I’d hired him to clean my drive at the time. Yep, his idea of building rapport with his clients was to belittle them! You won’t be surprised when I tell you I never hired him again.

I’m sorry to say that there are people out there whose ideas of the world are very much stuck in the ableist society. Do I lose sleep over it? No. There will always be things that as individuals we can do better and ways in which we can expand our understanding of others. Just like I’m sure I understand very little about the tribes who live in the Amazon and are untouched by the modern world, there will always be some people who don’t understand the disabled community. I do believe that overall things are improving and we have to accept it’s a work in progress…. for now.

Other articles you may like:

Have you experienced the ableist society? What can we do to improve attitudes?

Source: https://www.jumbledbrain.com/2020/02/20/living-with-a-brain-injury-in-an-ableist-society/

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[WEB PAGE] Navigating the ‘sex talk’ with your disabled teen

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Talking about sex and sexuality with your teenager is difficult for any parent. It can make them anxious and even give them sleepless nights. For parents who have a child with an intellectual or developmental disability, the idea of having a sex talk can seem even trickier. Resource website Cerabal Palsy FAQs explains how to make this conversation easier.

Talking about the birds and bees may be something you would rather avoid. But it is something parents need to discuss with their teens and pre-teens, regardless of their condition.

Puberty can become very confusing for any child, but particularly one with a disability. As their body starts to develop, they’ll be left with a million questions. It can be hard for them to accept the changes, but with the correct education, they can learn to appreciate their body and develop a positive attitude towards it.

As your child grows and becomes a young adult, having sensible advice enables them to embrace a healthy sexual outlook and stay safe. Here are some tips to help navigate the ‘sex talk’ and make it less awkward.

Have all the facts ready

Before you get started, have all of the information at your fingertips. Collect articles, books and DVDs on disability and sexuality and, after the talk, let them explore and learn further. 

If you’re not sure where to find information, talk to an organisation – such as MencapScopeFPA and Enhance the UK – that have resources on disabilities and sex.

Speak to other parents who have a teen with disabilities and any medical professionals you’re in contact with. Getting support from different people enables you to face the issue head-on without embarrassment.

It’s vital that you also ask their teacher about the sex education provided by the school to avoid confusing your child. Knowing what they have learned already enables you to use the given resources to build on the advice.

Use the right language

Decide in advance the words you will use. It may become hard, but it’s vital you use medical terms, such as penis and vagina instead of vague terms, such as ‘front bottom.’ These may give your child a wrong impression of the genitals.

You may opt to use anatomically correct dolls to teach your child the difference between females and males. Explain that puberty happens to all children and that feelings and body changes are part of their growth.

Start with the basics first

Sex education is a broad topic with an array of information to pass onto your child.

Explain the least complicated and necessary facts, and the rest should continue as the child grows older and understands his or her sexuality in more detail. 

Hygiene

You might want to start by buying them all the things that they will need for good hygiene, such as sanitary pads, shaving cream, soap and deodorant. Depending on your child’s level of understanding, make sure you explain the basics too, such as how to use pads or a razor.

Private vs public

Teach your child the power of differentiating between private and public. Talk about the different body parts and what’s appropriate to show, as well as clothing and how we use it to cover up. Also, talk about hugging, kissing – what’s acceptable and what’s not – and public displays of affection.

Owning their body

It’s important that your teen owns their own body and understands that they should not allow anyone to touch them without consent.

Stress that it’s okay to say “no” and get them to practise this using eye contact and assertive body language.

Additionally, talk about uncomfortable and comfortable types of touching. For example, discuss what might happen when they visit a doctor for a check-up. Also, teach them to report anything that makes them feel violated or uncomfortable.

Be open about desires and feelings

Just like anyone else, disabled people have desires, feelings, and sexual attraction. It’s important to be open about this and not to make them feel different or that it’s wrong.

Make a point of discussing sexuality openly but on their comfort level. Avoid such talk in public places and embrace one-on-one discussion in the privacy of your home.

If your child tells you something in confidence, such as their admiration for a particular person, keep it secret. Becoming their confidant helps them to understand the importance of privacy.

Emphasise the critical points of sexuality and discuss masturbation as a natural and healthy way to express and explore sexuality, but it should be done in private places.

Take it slowly and try different methods

It’s possible that your first talk won’t go exactly as planned or be fully understood, or that they won’t be ready. Don’t let that discourage you. Let go of a past approach and experiment with new ones. 

Try breaking down the concepts into smaller parts and use a range of different methods to increase the retention rate.

Overall, make the sex talk natural and fun, but even more importantly, take it slow, be patient, and understand the emotions and hormonal turbulence associated with puberty. 

Keep in mind a system that works for one family may not work for another. Continue trying different approaches until you find one that is fun and acceptable by both you and your child.

Most importantly, don’t force the conversation on them as this could lead to rebellion. Instead, try to find the right time for them so that they are comfortable and more open to it.

Allow them to talk to others

In case your child prefers to talk to someone else about their sexual feelings, allow them to do so. Letting your child talk to a person they trust most about their sexual feelings and body changes will help them transit to adulthood with ease.

Also allow them to use third-party sources to get information, such as a counsellor or family therapist, but make sure they are trusted. Anything explored online should be monitored and consider getting parental controls added installed.

Encourage continued questions

It’s unlikely that you will have covered everything in your first talk, and they may have subsequent thoughts and questions.

After your initial discussion, encourage your child to talk more than once and ask subsequent questions.

Depending on how easily they tend to understand things, be ready to talk about the same topic numerous times until your child gets the concepts. For some children with a developmental disability, you need constant reinforcement and a reminder of their sexual feelings.

Also, ask them questions after every discussion to ensure they have understood. Remind them that the discussion didn’t have to end when they stopped talking – you’re always there to talk further.

By Cerebral Palsy FAQs

More on Disability Horizons…

Source: https://disabilityhorizons.com/2020/02/navigating-the-sex-talk-with-your-disabled-teen/

 

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[WEB PAGE] Spice Up Your Sex Life: Top Toys And Positions For Disabled People

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No matter what your disability, you should be able to enjoy sex and pleasure. That’s why we’ve asked sex toy website Licketysplitneauxla.com to highlight the best sexy scenarios, toys and positions to help ensure you can have an amazing sex life.

Foreplay

Forplay is a great start to an adventurous sex session, or can be the main event if penetrative sex is tricky for you or your partner.

For something a bit different, set your foreplay in the shower or bath – wet hands sliding all over each other’s bodies is a real treat.

Start off by sending your lover a text telling them how you’re going to pleasure them when they get home – the prospect of sex is a great way to get you both in the mood.

Prepare a hot, soapy shower or bath for their arrival, then add candles, lather up, and follow through on your promise.

This will work just the same if you or they use a shower chair. Also, if either of you needs assistance with moving hands around the body, guiding or being guided to exactly the right spot is just as tantalising.

If you aren’t able to set the scene before they get home, simply text to explain what you’d like to do to them and they’ll be eager to help create the mood once home.

Use the White Nights Bullet and Controller sex toy for added fun. They or you can control the bullet and satisfy all your naughty cravings.

Thanks to the waterproof nature of this sex toy, it can be utilised during your hot bubbly bath or shower while fully experiencing your sensual areas.

White Nights Bullet and Controller sex toy

Make sure you cover all of the erogenous zones to take each other on a roller coaster ride full of dips, dives, thrills, and chills.

Begin with the ears, move down to the neck, then across the chest and continue down – where the oral sex can begin!

Oral sex

Oral sex can be considered foreplay or another alternative to penetrative sex. It’s versatile too – can happen anywhere, anyplace, and anytime.

If you’re a wheelchair user or have limited mobility, lying or sitting on the edge of the bed, a table, sofa, or shower chair, will allow your partner easy access and give you support. It can also work the other way too – your partner lysing on the bed, while you’re in your chair, means you’re in the perfect position to pleasure them.

Oral sex also means you can take the time to discover what really gets each other going. Don’t just use your mouth – touch, stroke and massage as well as kiss. Remember, the slower you go during this time, the more beneficial it will be.

Include an unobtrusive toy that will add to the pleasure without taking centre stage. The Le Reve Bullet is a great example and can be used anywhere on the body for her or him. And because this toy packs a punch, it’s also perfect if you or your partner have decreased sensation.

Le Reve Bullet sex toy

Solo play

When we think of individual time or solo play, we think of simple masturbation. But just because you’re on your own, it doesn’t mean you can’t make a real experience of it.

Set the scene with your favourite music – we all have that one song that touches us deeply or makes us feel sexy. Get the lighting just right so that it’s intimate and soft.

Expand your mind and think beyond just rubbing your nipples or caressing your breasts. It’s an excuse to seduce yourself. Explore your body all over and really spoil yourself.

If you need assistance from a toy, incorporate the Satisfyer Pro 4 Couples (pictured below) – it gives stimulation to the clitoris and G-spot.

If you’re a man, the Pussy Ultra Palm Pal – a tight and realistic vagina – will lend a helping hand.

Satisfyer Pro 4 Couples sex toy

Masturbation for two

Solo play doesn’t actually have to be for one – masturbating with your partner can be a real turn-on. Pleasure yourselves together or have hand sex with one another.

You could do this in the same room, via video or on the phone. It can also be enjoyed in bed, in the bathroom lying in the bath or sitting on a shower chair or from your wheelchair or in a chair.

In fact, it can be done anywhere you desire as long as you are letting your partner watch. Watching you pleasure yourself and your partner doing the same kicks up the naughty factor by a mile.

If you want or need some assistance from a toy, you could use the Palm Pal mentioned above for him, or the Elegance Lavish clitoral stimulator for her.

Neither of these need batteries (as is the case with the Satifyer Pro), so are perfect if you have challenges with manual dexterity.

Elegance Lavish Dual Motor Clitoral Stimulator sex toy

Use your senses

Using your senses can really take your sex life to the next level. It’s also a great way to pleasure yourself and your partner if you are more limited in what you can do.

Have a picnic at home or in bed with a spread of juicy strawberries, whip cream and chocolate – a natural aphrodisiac. As you begin to feed your partner, act like teenagers and have a good old make-out session.

Use touch as much as possible too. Run different silky fabrics over you or your partner’s body, move a feather over their skin and yours – or both wear something soft to touch if you’re unable to move much – and rub an ice cube over both of your intimate places.

You could also use the Fukuoku vibrating massage glove for a heightened feeling.

Fukuoku Five Finger Vibrating Massage Glove sex toy

Why not turn this into a sensual massage. It works wonders on your body and mind. Grab some essential oils and run your hands all over each other in turn. As you massage, lick, kiss and nibble all the erogenous zones as well. Pure bliss!

Don’t forget music or background sounds. Find out what your special someone’s favourite song is, then compile a couple more and you’ll have a sexy playlist.

If you or your partner can’t hear, play something that means you can both feel the vibrations through your bodies for added tingles.

Think about lighting too. Add some candlelight to every nook (battery operated) to make it even more sensual. Candlelight also looks very very flattering and sexy when it flickers off each other’s body.

Even if you or they are visually impaired, the flickering light can often still be seen, adding another dimension.

You could also ramp things up with the Sex and Mischief Nipple Suckers nipple clips to provide increased sensitivity and blood flow while you enjoy each others’ bodies.

Whatever you do, take your time, be mindful and really tune into the different sensations.

Sex and Mischief Nipple Suckers nipple clips sex toy

Roleplay

Spice things up by pretending to be strangers headed for a one-night stand. Meet somewhere accessible for drinks or, if getting out is tricky, simply set the scene at home with a minibar and cocktail glasses. Play footsie under the table or touch each other discretely.

Meet in the parking lot, lock eyes, press your body against theirs if you can and have a deep make out session. Once you’re home – or have headed to the bedroom – continue kissing and caressing each other, steadily ramping up the volume.

Why not also go to ‘powder your nose’ and come back with the ‘lipstick’ from your handbag – My Secret Screaming O Vibrating Lipstick. It is multi-function mini vibrator with a soft sensation-focusing ‘flex-tip’. It’ll surprise and delight your partner.

My Secret Screaming O Vibrating Lipstick sex toy

Assistance from sex toys

If you or your partner have difficulties with getting an erection, the Fetish Fantasy Hollow strap-on is a great solution.

It can also be useful if one of you doesn’t have full use of your/their legs or abdominal muscles, and so have difficulty thrusting and fully penetrating.

It can also be used with the upside-down turtle position – keep reading for more.

Fetish Fantasy strap-on sex toy

Disabled sex positions

Upside-down turtle

The ‘upside-down turtle’ or just ‘turtle’ position can be a great option for a woman who has difficulty with movement or chronic pain. It also works if you both just want a change.

For this, the more mobile partner needs to kneel while the other, facing away from them, lowers their chest forward so that it is resting on the bed.

Almost lying face down, the partner behind holds their hips so that they can support their weight while thrusting.

Sitting pretzel

This position is ideal for a man who uses a wheelchair, has limited mobility, chronic fatigue and/or lower back issues.

It involves the partner in a wheelchair or sitting in a chair positioning themselves by the edge of the bed but facing away from it.

Their female partner then straddles them, also facing away and hooking their feet on the edge of the bed, allowing them to brace themselves to thrust.

It is that simple, and it gives you the closest and mind-blowing most affectionate sex you have ever had.

Wraparound

Sitting face-to-face during sex means you can stare into each other’s eyes. The wraparound position – another one that is ideal for a man who has less use of his legs or abdominal muscles – calls for the man to sit on a flat surface with their legs outstretched.

They should be almost lying down, but sat up a little – pillows can help if they don’t have the strength to hold themselves up.

The other partner then sits on their lap facing them and wrapping their legs around them the back of them – they can also help to hold them up.

This position allows the person sitting to experience as little or as much as they like, and means you can easily touch or suck the person on top’s nipples.

To create more fullness and penetration, the partner on top can lean back regulating the movement.

By Licketysplitneauxla.com

More on Disability Horizons…

 Source: https://disabilityhorizons.com/2020/08/sex-toys-and-positions-for-people-with-disabilities/?ml_subscriber=1494896259650032700&ml_subscriber_hash=l9n6&utm_source=newsletter&utm_medium=email&utm_campaign=sex_toys_and_tips_for_disabled_people_to_spice_up_the_bedroom&utm_term=2020-08-24

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[VIDEO] Meet Pepper, a Socially Assistive Robot to Provide Respite for Caregivers of People with IDD. – YouTube

The video introduces Pepper, a humanoid robot, which can provide social, physical, and emotional support for older adults and people with disabilities. In the video, Pepper teaches a person how to do a fist bump, reads a story, and plays a game. Socially assistive robots like Pepper may offer an innovative approach for significantly increasing the capabilities and social participation of people with disabilities across environments of their choice.

Wireless RERC researcher, John Bricout, PhD, who is the director of the School of Social Work at the University of Minnesota, Twin Cities (UMN), and Dr. Julienne A. Greer and collaborators at the University of Texas at Arlington (UTA), Emotional Robotics Living Lab, are investigating the socially assistive capabilities of “Pepper,” a versatile 4-foot tall humanoid robot. Pepper can provide social, physical and emotional support for older adults and people with disabilities. Bricout notes “the broad aim of our work is to extend the capabilities and quality of life of older adults and people with disabilities, leveraged by socially assistive robotics as partners in learning and action.”

WirelessRERC

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