An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

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Why Bullying isn’t Healthy for ANYONE, a post intended for Karen Kabaki Sisto (Trigger warning for everyone else also I cussed a bit))

I know I have not posted in some time but the surgery I had and slew of failgivers and bad agency issues took my writing spoons for survival. I am just getting settled with my new carer from a new agency and this article has come out that I cannot even finish. This post like most of what I write has a trigger warning for a reason.  Here is the article by the person I am chewing out below.

Dear Karen-

I am calling you out. The initial title of this post? You better run bitch. Why? The internet is coming for you. You see you did something stupid. You wrote an article that promotes bullying. The idea that bullying is acceptable for anyone is already disproven. Children die daily because they cannot endure bullying and the pain it is caused. These are not just autistic children but children across the human spectrum, some of whom fall into the category of normal. People of all ages are bullied for skin color, eye color, hair color, weight, ability, and so many things I cannot list it all. Bullying is always arbitrary and boils down to psychological trauma that sometimes never heals. It shatters confidence.

The article, as far as I could read sounded like my mother. I deserved to be bullied because it would make me stronger. I was weak because I couldn’t take the pain. That is bullshit. I am not weak. Medically, I admit I am, but mentally I have dealt with things people should never be able to imagine coping with, and I am still alive. I have spent my life aware of death itself because of my body and more so my family. My family of monsters. I am angry this was written because there will be people who do not think before they act, and will traumatize already fragile people. Autistics get bullied all the time, this simply removes potential resources. Of course this is also from the people who created the ABA system of abuse. They call it therapy but I mean mother fucking abuse.

In the end I cannot stand by and be silent on this. Bullying caused me to cut myself. With my medical conditions this could be fatal. I thought between my parents and the other children I deserved pain. I thought that if I cut myself maybe they would stop. If I hurt just a little more I would be purified by that pain and worthy. Some of this is through the lense of absurd religion but not all of it is. I am crying as I write this because I know out there people are dying a slow death from bullying and this article will cost them dearly. I am crying because I cannot protect them if I am silent. So I am roaring.

Here are ten effects of bullying regardless of autism.

1. PTSD- Post Traumatic stress is not a choice there is no pushing through it and it can forever undermine self confidence. Avoiding triggers is the treatment, and like avoiding allergens to not die or spontaneously combust into hives and anaphalaxis this is not really effective because its impossible. Anything around at the trauma from a scent, lighting, touch, voice, words, or even clothing can become a trigger and you will not know until you find out the hard way.

2. Lowered Confidence- Confident people succeed. We do. I had to rebuild myself and am lucky I could but not everyone is able to do that with or without help.

3. Depression- This too can feed lowered confidence and can get you bullied. Don’t feel u p to anything because you hurt so much and are sad? People WILL bully you for that. Depression is hard to live with and bullying is a cause. Depression is also painful and often causes people to kill themselves.

4. Lower grades- You do notlearn when afraid, you learn less when stressed. There must be a safe place for people to go to learn. Living without one creates a priority of survival not education. You can’t focus on algebra because you are focused on not sitting wrongly, or the physical threats that bullying can entail. Sometimes people even drop out.

5. Social Isolation- Bullying makes it harder to make friends. Cliques aka human herds are social. While not every autistic is social many are, and this deprives them of the opportunity to make friends, to learn because a bully takes out your friends too. No one wants to endanger themselves for a stranger. Sometimes not for people they know. Bullies are dangerous, predators even.

6. Health issues- Bullied for weight? Well you may just end up anorexic. Bullied with physical violence? You could end up with serious physical trauma that disables you. It can also be BOTH THINGS. Bullying can even cause sexual dysfunction, increase the trauma of having puberty, and living in stress is also just bad for you. Hypertension, heart issues, bad diet, inability to sleep just to name a few.

7. Violent Retaliation- I have written about it before, but I nearly blew up my high school to kill everyone so allthe pain stopped. I also realized this was not healthy and stopped myself. Not everyone has that ability and sometimes these victims make more victims in a violence chain reaction. School shootings, the shooters are often bullied. This isn’t once or twice. Its not “Just Columbine”. Its also not always so clear cut. I became so afraid of bullies and had no safe home and ended up hurting the only friend I made before I was an adult because I didn’t have the ability to think past the fear and she touched my food. Yes I was also abused at home but a lot of bullied kids are, not just the bullies and sometimes those bullies have healthy home lives despite what the Film Industry/TV Industry tropes are.

8. Alchohol and Drug Abuse- Oddly bullies tend to be more prone to drug and alchohol abuse in some studies than their victims but compared to non bullies/bullied people both parties are much more likely to drink. Bullying is not just bad for the victim but creates bad mental hygiene for a life time.

9. Criminal Records- I can vote because my mistake of assaulting my friend came at the right age but not everyone is so lucky to get help and both violent responders to bullying and bullies still have to live with the consequences of their actions and reactions for life. I can’t forget, even with two brain injuries, the realization that I nearly killed my friend. I have to live with that feeling forever. Any time I think of her, it is there. A reformed bully joins me there but often they continue to escalate into other criminal behaviors, as bullying is another word for assault in MANY areas.

10. Missed Opportunities- Bullies and their victims both miss opportunities. Later in life the victim may be successful, needing to hire someone. The bully applies and… I would not hire them if I was in HR. This applies to non work things too. I have forgone games and social outings because an abuser/bully was there. Sometimes I tell the bully/abuser to fuck off, but I am an adult and aware of my power. I am the rare person who despite all of the crap they endured is able to do so. Its not common.

I am I think the sort of person who inspired this false and illogical article. I am strong. I am tough. I kick asses and take names. I push myself and sometimes I can’t get past the bullying. It still hurts me. That isn’t stronger. Stronger would be less of that. If I had not been bullied at school I would have had a refuge. Not having that? I tried to kill myself a few times and failed. I didn’t get found or helped, I just didn’t do it right. I am glad of that but telling me that I am stronger because of this is an insult to my intelligence, common sense, and every autist on the planet. I understand the writer wants to justify their being a bully, but I hope ANYONE with children near them runs, because this isn’t a red flag. This is a sign that reads: I am an abuser. I will hurt you. I will hurt the ones you love. I will forever scar the minds of innocents. I am also not qualified for anything. Not even McDonalds.

No one should be bullied. Autistic children are much more vulnerable, as we still cannot even be guaranteed education, access or care. We are discriminated against at all levels. I have been denied access to medications because of autism, endangering my life. I have been denied access to necessary law enforcement. Autistics are already trained to obey everyone, by ABA which the author supports. We can ill afford more of the same. It is much arder to stand up and say no. A lot of the reason Autistics struggle with these things swings back to being bullied. Bullying is abuse. Calling abuse healthy is assinine. A lot of this post was edited to remove the word fuck and many other unfriendly epithets to the originator of that piece of shit article. I am still cursing in it because frankly, that fucking piece of trash article deserves to be called exactly what it is.

Karen Kabaki Sisto M.S. CCC-SLP I hope you read this. I hope you understand that this paragraph was originally cursing and I hope you learn something. Bullying doesn’t give any perks. Putting the burden of the victim on making it about team work, autism awareness every month, claiming we learn verbal skills when we are terrified of being harmed, grow stronger, gain friends, and a better well being shows me you have NOT looked at the effects of bullying at all and are either high or stupid. Self Esteem is often low in autistic children because of bullying. Please, quit your job. This is not said lightly but quit your job. You don’t belong near vulnerable people.

I will be blogging extensively about your article and I hope you get this on your “other folder.” I also hope you read my article. As an autistic adult I am more qualified than you are to deal with autism and you have proven to be the least qualified hack  since Jenny McCarthy. For your education here is a link from me to you, about the risks associated with bullying. I didn’t consult it, because I know them by living them.

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