disability

Chronic Disability Chaos

Posted on by kkwrites8739

There’s one thing living with this disease guarantees; chaos will happen.

I have this plaque hanging above my living room door to remind me that one must have the chaos to get to the results of living.

Amazon.com: Chaos Chinese Framed Calligraphy Print, Oriental Calligraphy: Art Prints: Posters & Prints

One moment. One day. One item of chaos and the next little while in my life is FUBAR.

I’ve always tried to be an independent woman who doesn’t need anyone to be happy or whole. This unfortunately led me to also dislike asking for help. Being a single mom made it all harder. Having a child with special needs added more chaos.

Right now I have an awful lot of people telling me how to live my life. I KNOW they are coming from a loving place wishing only a happy life for me. However, that is one thing people who live with disabilities hate the most. The thought that they might know what’s best for my life even though they’re not living it makes me livid.

One friend, speaking to me like I was a child, kept repeating to me “You CAN’T fall again. You can’t. You have to live in a way so you don’t fall.”

I was living my life. I was doing what anyone else who lives in MN does. I was snowblowing my driveway. Like I’d done many many times before and because I AM capable of doing so. Think it’s OK to tell someone to not do what they can because something “might happen?” Do you tell your kids to not grow up because something “might happen?” For heaven’s sake no one lives in a bubble. Anything can happen to anyone at any time. No one wants to live in fear.

This same person told me he was very angry with me for not asking him to do things for me. I do and have asked him to things for me that I CAN’T do. Why should I ask people to do things for me that I CAN still do for myself? Because I “might” get hurt? Because it will cause me some pain to do it? Do ya’ll have any idea how much pain I live with? LOL! Plowing the driveway only causes me as much pain as mopping my floors. Should I not clean my home either?

This image has an empty alt attribute; its file name is see-me-despite-disability.jpg

There was this other guy who I thought about dating, but he told me I posted “so many things on my facebook page that were about chronic illness and pain,” so he figured that was all I was about or perhaps I was making up how much pain I was in. I post about pain so my friends can learn what my life is like and know when things are good or bad. I post because I’m not often out in the world to see anyone in person and talking on the phone is difficult with hearing aids sometimes.

I have a plethora of friends telling me to make sure I always have my phone with me. I was outside in my own yard snowblowing. I didn’t put on my hearing aids because the plow is so loud. Why would I bring my phone that I wouldn’t hear either? Do YOU always have your phone on you every moment of every day? Do I remind you all of the “I’ve fallen and I can’t get up commercial?” The commercial for elderly people. It’s a commercial about wanting and needing to be able to live on your own despite illness or disability. People are only seeing that they fall and need help. They aren’t seeing the happy person living their best life.

So I was living my life and something happened to me that can happen to anyone, but I get messages to take better care of myself. I get messages that it’s my fault I got hurt because I should know better than to do things for myself. I get messages that I’m a lesser person and must rely on others at all times and if I don’t then I deserve the consequences. The message is that I should do nothing, not even the things I am capable of doing.

Even my son, also with the same bone disease and living with chronic pain and disability, wanted to punch the friend talking to me like I was a child. I realize it’s the “way” he was talking to me, the words he was using that my son and I took offense to. I realize he had no intention of making me feel like that. I realize he needed to make himself feel better. But, I simply don’t NEED him to do things for me that I don’t want him to do! I don’t need “taken care of.”

I complain when I DO ask for help with something and then no one is there for me. THAT’S frustrating. But then when I do for myself I sure get a lot of people angry at me for doing something on my own. I’ve been snowplowing my own driveway for years, despite the pain. I’ve asked for help when my snowplow was broken and not received it when I needed it. So, no, I will not stop doing it myself when I can.

When I can. Now, I can’t. So, ya it’s still winter so I WILL need help to do the driveway now. I even need help to put on pants, socks, shoes right now. I have to depend on my disabled son for this. I have caused him an increase in his chronic pain since I got injured. I can’t stand up to cook, I need to figure out IF I can drive, I can’t clean the house. Those things I will need help for, for now. And I’ll ask. I am seriously doubting that I’ll get anyone to help except my son and the guy who talks to me like I’m a child. I have friends that I don’t doubt would help me, but they don’t live here, they are elderly, or they are disabled themselves.

Chaos. I like the way life is constantly changing. I can go with the flow. I’m trying not to be angry at how these people think it’s OK to tell me how I should live. It’s happened before, it will happen again. We must push against difficulty to make our dreams. I have a dream of a world where people with disabilities are treated like other people. A dream where simply living isn’t more difficult for us. A dream where whenever ANYONE needs help they don’t feel bad or guilty for asking for help or have others tell them how they should live instead.

I’m just going to add some stuff from the internet:

If you see a person with a disability struggling with something, your first instinct may be to jump in and help. However, without knowing that person’s specific needs or intentions you may be doing more harm than good. Always ask before offering your assistance.

  • Sometimes, a person with a disability may seem to be struggling when they are actually fine. It may simply take them longer to do certain tasks, but that does not necessarily mean they need a helping hand. If you think they might need help, just ask.[6]
  • If you see someone with a disability struggling, simply say “Would you like any help?” or “Do you need assistance?” You do not have to say any more than this.
  • If someone declines your offer of assistance, do not be offended or insist on helping. Simply go on with your day.[7] They know their needs better than you do, and pushing them would come off as rude.
  • Do not offer medical advice, especially if you are not a doctor. While suggesting yoga for someone with chronic pain may seem helpful, remember that person already has a doctor who knows his specific medical history and giving out advice without solicitation comes off as condescending.

Ask before helping out. One of the first responses of many people when they see or meet a disabled person is to try to give them help. While this gesture may seem kind, you could actually be irritating them or getting in their way. Ask if they need you to perform a certain task.

  • “Would you like me to push your wheelchair?”
  • “Do you need help walking?”
  • “Would you like me to guide you?” (to a blind person)
  • “Should I move this chair out of your way?”
  • Let the person tell you what they need instead of automatically assuming what they need in the moment.[1]

Know that disabilities can be more severe on some days than on others. They can waver based on the person’s energy level, the weather, what they did today, their general health, and many other things. Just because someone can or can’t do something today doesn’t mean it’ll be the same tomorrow.

  • Wheelchair users may be able to walk short distances, or may even be able to go without wheelchairs some days.
  • Autistic people may be able to enjoy hugging one day, and be unable to handle it the next day.
  • When in doubt, ask.

DON’T MAKE ASSUMPTIONS
People with disabilities are the best judge of what they can or cannot do.
Don’t make decisions for them about participating in any activity.
Depending on the situation, it could be a violation of the ADA to exclude
people because of a presumption about their limitations

People who use canes or crutches need their arms to balance themselves,
so never grab them. People who have limited mobility may lean on a
door for support as they open it. Pushing the door open from behind
or unexpectedly opening the door may cause them to fall. Even
pulling out or pushing in a chair may present a problem. Always ask
before offering help

It’s about respect

Posted on by kkwrites8739

Please read.

I don’t post this stuff for sympathy. I post to advocate for ALL people with disabilities. I post so everyone knows what it’s like. I mean you all don’t go to disability websites, blogs, Facebook pages etc to learn unless something happens to someone you know or love. Well, guess what, everyone needs to know this stuff so everyone can help to make it better.

If you see someone parked illegally in a handicap space; REPORT IT to the police, not the store. They don’t care. I mean, Walmart changed out a bunch of handicap spaces and made them into spaces for people running in and out to their pharmacy. I get it during Covid when pharmacy employees had to be running in/out to deliver, but now? Lazy people park there so they’re closer to the doors if they’re going to the pharmacy or not plus shopping the entire store so the space isn’t available for an hour. Clinics pharmacies put up those spaces, too, but they only allow parking in those spaces IF an employee is bringing out your medicine. ONLY!!!!!!!!!!!! Can people just stop being SO lazy? 3 of those spots were taken up by vehicles WITH proper handicap parking stuff at Walmart today. GOOD FOR THEM!!!!!!! Show people who SHOULD be able to park there.

If you see youth playing on the electric shopping carts YELL AT THEM EVEN IF THEY’RE NOT YOUR KID! The last 5 times I’ve gone to Walmart there have been NONE available and 4 or 5 of them marked Do Not Use: broken. Target has always had one available or tries to find one for you. Leukens? Usually has some available. Marketplace had one available. NO other stores in town have them. Not sure if Home Depot or Menards or Fleet do, but I’ve never seen any available.

See kids (or asshole adults) pounding the button to open the door electronically or simply standing there repeatedly pushing the button? TELL THEM TO STOP!!!!! Ask them if they know how difficult it is to get in a door using crutches or wheelchair, etc, when those buttons are SO OFTEN broken? Tell them they SHOULD CARE because it will be their grandparents, a family member, or a friend who WILL need those buttons some day.

I understand now why my Mom has been refusing the wheelchair for 25 years. It totally takes away your independence! It causes pain to use! (At least for people with multiple medical disabilities.) And she has a husband to help her.I am lamenting the loss of independence and self-ability (is that a word?) I didn’t want to be in a wheelchair at 52, almost 53. No one does. Being single really doesn’t help. I don’t have a partner to help push a cart so I can roll the chair. Take Aidan with me? Sometimes (OK, a lot) I really just want to get my errands done without worrying how bad his anxiety is at that moment. I just can’t do it without him anymore. I realized that today. Had a momentary crying jag in the car of physical pain and emotional frustration. Then told myself to stop and just accept it.

After the fiasco of trying to get my temporary handicap parking permit (back and forth 3 times to clinic to DVS,) on my crutches; I am in SO much pain now. Plus, slipping on ice on crutches makes your back twist. Not fun. I HATE ice melt crystals due to the impact on the environment but USING IT IS NECESSARY. It’s not just a nice thing to do that very few stores use beyond their front door. You CAN’T use a wheelchair on ice! That’s a whole new concept of “sit and spin.” LOL. Walkers, canes, crutches on ice? ASKING FOR PEOPLE TO HAVE A BAD FALL. Please ask your stores to use ice melt on their sidewalks and maybe even around handicap parking spaces.

Walk Safe This Winter – Newsletter – Orofino Physical Therapy

ALSO, snow/ice from shoes/boots tracking in/out of stores NEEDS TO BE WIPED UP ASAP!!!! I almost wiped out slipping on my crutches on melted “water” at 3 places today. Businesses in northern states should just KNOW that once the sleet and snow falls they need to have at least one employee on each shift mopping up water all day long. Is it a sucky job, sure, but do you want your customers to come back? Do you want to be sued, or at the very least have to pay for someone’s medical bills? When you’re on Medical Assistance and go to a doctor for an injury they send you a questionairre EVERY TIME asking if you got injured at home or elsewhere. If MA can get out of paying a bill they will go after the place where you got hurt – even a friend’s or family member’s home.

I'm scared to go outside because my crutches slip on all this rain, ice and

Honestly, people still stare???!!!! I thought people had got passed the whole staring at someone in a wheelchair. I’ve never had SO many people openly gawking at me and talking about me until today (that I know of, tee hee. Let’s not think back to some of my hair color choices.) I was pushing a cart while wheeling the wheelchair. OMG must stare at that person!!! No, it wasn’t easy. Do you KNOW how difficult it is to go around corners with one hand? I was doing pretty good. Had the cart hooked on the front joint of the foot steps of the chair so I could go in straight lines. Not too bad. Had to lift the cart off every time I had to turn a corner. I saw 3 other people in wheelchairs, but they had grandchildren or husbands pushing their carts. 3 other people asked if they could help me. ALL OF THEM WERE AT LEAST 80 YEARS OLD and walking slowly themselves.

Place For People With Disabilities - 'It's Rude Not To Stare' A smart copy twist on a familiar phrase champions the brilliant athletes competing in the Paralympic Games #paralympics #games | Facebook

I had SO MANY more people push their carts out in front of me or walking out in front of me making me have to suddenly stop. PEOPLE ARE JUST SO RUDE AND UNCARING! Even at the self-checkout the Walmart employee just stood their and watched my struggling to check and bag my groceries. All my 5 items. Grrrrr. What are they being paid for anyway?

A poem i wrote. (C) SJB #disability #disabilities #poem #poetry #poetsofinstagram #SJBpoetry | Writing groups, Words, Poetic quote

There were nice moments. When I got stuck between the door to the milk jugs and my cart a lady stepped in to help. When I was leaving the store pushing the cart with my chair a young man who had already entered the store turned around to help me get to my car. He said his grandfather had been in a chair. He understood. Then when I was lifting the chair unstably into the car the elderly lady in the car next to me came to help. With my feet in so much pain my balance is shot to hell.

17 tips for talking to and acting around a person with a disability - Rare Gems Blog

Maybe it’s due to growing up with a disabling disease that most family members had. Maybe my parents just raised us better. My siblings and I ALWAYS stop to ask if someone needs help. We hold open doors. We reach for items for others. Common courtesy is gone. Now people would rather video you on their phone and laugh. People with disabilities just have to think outside the box and figure out how to do things on our own in a world built for healthy physically fit people obsessed with themselves.

Common Courtesy by Steve Gergley - FICTION on the WEB short stories

It’s Chronic Pain month, ya’ll!

Posted on by kkwrites8739

I’m going to let you all know what happens to me this month. Chronic Pain Month. Yes, I live with daily pain in my feet, knees, hips, back, neck, shoulders, arms, hands, and fingers. The severity of the pain goes up and down, but it’s there. Every. Damn. Day. For my son, too.

So I do try to do things to help myself. I use proper body mechanics, do physical therapy, take pills for pain and spasms so I have some quality of life. However, those things don’t always help. Like today. I went to the pool. Did my routine, which really is just simple stretches and lifts and I use pool therapy plastic “dumbells” and/or pool noodles. It always feels good to get in the water. The weightlessness and warmth is wonderful. When I’m done I often sit with the spa’s jets aimed on my achy parts. Ahhh, heaven. Usually I feel energized for a while afterwards and/or have less pain for an hour or so. Not today.

I got in the shower and raised my arms over my head to wash my hair and WHAM; incredible pain screamed through my back/side. What to do? Stop the shower only half washed? That is always an option, but I pushed through the pain and finished. By the time I walked to my car it was throbbing. Getting INTO the car again caused wrenching pain. Driving, hitting bumps, going into turns: PAIN. Did I go home so I could relax and take pills? Not yet. I had a responsibility to take care of.

Chronic Pain Quotes - I get so excited when I find a saying that is perfect...and this one is one of them! | Facebook

I “work” for Rover. A pet-sitting service and I had a pet to go to. For the fee I am supposed to feed, play with, and/or take care of waste. For at least half an hour. Could I just drop in, check on things, and leave early? Sure the clients aren’t home to know how long I stay. But I KNOW. I pride myself on being reliable. Playing with this pet caused more spasms and pain, but I need the money. And, I love these animals. I get love back from them and that feels wonderful. Pretty sure today’s pet knew I was in pain. She sat on my lap more than she’s ever done before so we could just be. Many humans don’t understand or notice or care when someone is in pain, but animals know.

Barstow Animal Shelter

I finally got home, took a pain pill and a muscle relaxer, and put food in the oven for my son. A frozen lasagna. That was not my plan. I had planned to cook up some chicken and make a nice homemade meal. I’ve been “trying” to do this low carb diet, but tonight just wasn’t going to let me do veggie prep or stand for longer than a few minutes at a time, even on the pills. So the old standby; frozen food. My son’s reaction? “Ya, that’s our life. We can’t make plans.” Plus, lasagna is his favorite food.

Since I don’t think lasagna is on a low carb menu I ate popcorn. Not going to cook or prep anything for me. Just need to sit. Just need to sit and not move. I hope whatever I did to cause this latest exacerbation abates by morning so I don’t have to take pills to get through work tomorrow. I might work in a CBD store that sells Delta 8, but no way can I take it at work! To be able to get to sleep tonight though it will feel wonderful.

Katie Kacvinsky Quote: “But pain's like water. It finds a way to push through any seal. There's no way to stop it. Sometimes you have to let you...”

We need it too

Posted on by kkwrites8739

Sept. being chronic pain month, I’m going to broach yet another taboo topic. Sex. Humans are sexual beings. We are made in a way to enjoy it. If we weren’t supposed to enjoy it we wouldn’t have those receptors that give pleasure. This is yet one more thing to add to the list of things you often can’t do when you live with chronic pain. If you do, you often can’t enjoy it.

Sexuality: A Critical Component of Quality of Life in Chronic Disease - Nursing Clinics

There are medical pills to aid those with problems getting to arousal, keeping arousal, not being too dry, and other sexual difficulties. But if doing it hurts somewhere that has nothing to do with sexual organs, well you’re just not going to enjoy it and there’s no medical help except pain pills that often lessen the pleasurable feelings.

Stomach Pain After Sex: Why Women Experience Abdominal Pain After Sex or Intercourse

This is where I say Yay for sexual aids “toys” and even humans that can help who won’t judge. Yep, I mean prostitutes. You can buy a human who won’t judge you for your looks and doesn’t know you or care about pain, but their job is to give pleasure. It’s not talked about much even among those of us with chronic pain, but as a social worker I know such companions ARE used by people with disabilities and chronic pain. Yet society judges that you are buying it or taking advantage of the sex worker and you are bad.

If you’ve never had a disability or injury that’s caused you to lose use of an arm or hand or it causes incredible pain to use it, then you have no idea how much sex is missed. Well, not sex, but the arousal and orgasms. If you can’t arouse yourself manually how else are you supposed to? Sex toys and/or a sex worker.

I read books by an author who includes in her series, that is futuristic, government licensed companions. LC’s have rules to follow, like health care and physicals to keep their license. They aren’t supposed to use illegal drugs. However they can use drugs designed to enhance the sexual experience if the client wants it. Oftentimes LC’s will get training in the social sciences; psychology, or sex counseling for couples, etc. Yes, there are those of “lower caliber” who work the streets, but they still have those rules to follow. There are those who cater to the rich who have those degrees in psych or business. What I’m saying is, they are an accepted part of society. Accepted as something that is necessary, and lessens the amount of sex crimes too. They enjoy giving pleasure to the client. It’s a job. Many are married.

Personally, I think the world would be a better place with Licensed Companions. Even low income people can afford them. Many times people with disabilities or chronic pain are low income. There wouldn’t be the fear of judgement or catching diseases. The quality of life of a person who can’t manually give themself pleasure would increase. Happiness would increase. Some of you are thinking, well just use the sex toys. Again, if you can’t use your hand?

Michael Kaplan Sex Quotes | QuoteHD

Are people with disabilities supposed to never have or enjoy sex or those pleasurable feelings? And don’t, just don’t bring religion into the discussion. The ONLY religion that says sex is only for procreation is Christianity. I’ve only ever heard christians say you’re not supposed to enjoy it. That’s bullshit. If you actually know history then you know Romans and Greeks used prostitutes, because husbands were only allowed to have sex with their wives at certain times, etc. Many histories/cultures had prostitutes as people of status in society.

Touch, Sex and Disability in the time of COVID-19 – Handi

I’ve had the prostitute discussion and the porn discussion with many of my friends and social work colleagues. Some think there’s no way to have it without the person being abused. The hooker, stripper, or whoever HAD to be forced into it somehow. It can never be a good choice to sell yourself. I also know some women and men who enjoy their good looks and their sensuality and WANT to be a stripper, etc, enjoy giving others pleasure. Some simply enjoy that powerful feeling sex can give us.

Why should people in pain or disabled be denied feeling sexual? Modern society needs to get rid of the taboos around talking about healthy sex. Surely virtual reality will come up with something soon.

The Ultimate Guide to Sex and Disability | Shirley Ryan AbilityLab

Not complaining all the time . . .

Posted on by kkwrites8739

This Keto business takes up a lot of time. I discovered eggs are the go-to for breakfast. I’m not into eggs enough to eat them every fricken day. So I did my due diligence and googled for other keto breakfast ideas and found grain-free oatmeal (will it taste good?) and many types of granola type breakfast “cereals” to make. Again, will they TASTE GOOD and not have weird texture? I am a cereal lover. Goddess PLEASE make these taste good!!! Reading through all these online recipes I’ve discovered it will take a good amount of time doing prep, chopping, etc.

Over the years I have looked for recipes so I wouldn’t have to put in time standing at the counter doing prep. Prep HURTS! The chopping, cutting, etc doesn’t mix well with arthritis and carpal tunnel and the standing is horrible for my hips and back. I’ve bought gadgets to use to do the prep for me, but ya can’t always use said gadget AND it makes more items to wash. Standing to wash dishes also hurts.

It really sounds like I am just a whiner, huh? I really do want to change my eating habits to diabetic healthy, but I also live with a lot of daily chronic pain. Most people really don’t understand how these common household “chores” such as cooking a meal can really hurt. It sort of defeats the purpose of wanting to eat/cook healthy if you’re in too much pain after cooking to actually eat it and also can’t get back up to do the dishes and cleanup. It really makes a person just rather not eat. Seriously, this last week I’ve been going hungry instead of cooking. It’s been a bad pain week. I’ve been eating keto bomb meal replacement bars instead. And they’re expensive. Plus, I have a pantry full of white rice, white pasta, canned vegies, and canned fruit from the food shelf that I’m apparently not supposed to eat.

It’s bad enough that I feel like a loser who can’t get things done around the house and yard that NEED done and now I’m supposed to add all this cooking prep? People with medical disabilities are simply not supposed to be poor and alone. I HATE complaining about pain, but it is a part of my life. I feel so down about myself and think of people I know with cancer or other worse than I ailments who somehow manage to get up and cook, then I feel worse. I think of all the elderly and frail people in the world who are poor and alone and I really wonder why our society doesn’t offer help unless you pay or are part of a church? I’m 23 years younger than my parents who are both in huge amounts of pain. It makes me feel like a bad daughter that I can’t be there to do things for them. I know, somehow, between the both of them they manage to cook meals. I also know that afterwords in the evenings they sit in pain. A man who spent his life using his hands to make beautiful homes and other carpentry work then driving a truck now can barely hold a book at times. Mom has to wear a battery operated heating vest at all times to help the pain she takes opiates to lessen. How do they have any kind of life? They force themselves to do, to drive, to still volunteer.

Quality of life is a huge thing. Most people take it for granted. Most people don’t have to take pain medication to function. Some people take opiates illegally and make it hard for those of us who need it to get it. My chronic pain doc again mentioned medical marijuana. I can’t afford it. Aidan’s doc mentioned it to him, too. We could get the cards, but then have to drive to Brainerd to get the products, causing more pain. Right now we’ve been taking Delta 8 gummies, since I get a discount at the store. That’s one of the reasons I wanted to work there. I need the money and their products, but this last week has been difficult to work through my pain and not show it to customers. Can’t take D8 at work, or Tramadol.

So I come home and take stuff for pain and nothing gets done around the house or yard and I can’t stand up long enough to cook. At the pool I’ve gone from pushing myself to do cardio to just trying to use the pool to help alleviate pain with slow stretches. With my glucose at 116 I have to lose weight, but exercise brings on more pain so eating different is going to have to work.

Exercise Hurts | Funny Workout" Poster by BootsBoots | Redbubble

I wonder how many times I’m going to burn and cut myself with this food prep while on Tramadol? Maybe I should just take out stock in these keto bomb meal replacement bars. I am SO very grateful to Rebecca Strong Schultz for coming to help clean the house last week. Hmmm, who wants to come help do food prep? LOL, naw, that would have to be weekly and Who can afford that? It’s OK to let the house and yard work go for a while, only I know how long the floors go without a mopping. No one else needs to know. Just know, the next time you see dirty kids in a store or drive by a yard that needs cleaned up or mowed that you have no idea what those people might be dealing with: pain and/or mental health issues. Try not to judge and maybe donate to a local nonprofit. Pain sucks.

Mommy Advocate General

Posted on by kkwrites8739

A Parent Advocate Sued Anywhere Is A Parent Advocate Sued Everywhere – Volume & Light Nashville

It doesn’t stop when I’m tired. It doesn’t stop when I’m sick. It doesn’t stop when I’m broken. It never stops. Once you are a mother of a child with special needs; you are their advocate for life.

You are their lifeline. Their voice.

I knew he would be born with the same degenerative rare connective tissue disease that I have. My genes would give that to him. I didn’t know I would never have my own life. Even after he’s legally an adult. He and I got so much more than just the one disease.

Challenges and Issues for Special Needs Children

From birth it began; paperwork. It. Has. Never. Stopped. How do you layer-down a human life to reams and reams of paperwork. It started with a simple printout: FRAGILE, Handle With Care. It didn’t matter that I was lying there in pain, not only from childbirth but from my own medical difficulties with the disease we’d share. I had to forget about me and yell at a nurse for the way she was yanking on my son’s legs.

Then we began Early Head Start, a preschool program, with more paperwork. Medical proof that my child would be full of bruises because that’s part of our symptoms. I had to prove that I wasn’t harming my child and the bruises weren’t abuse. His first broken leg at 10 months old wasn’t abuse. Start the paper trail. Keep all the medical files.

Osteogenesis Imperfecta: Brittle Bone Disease - Creative Med Doses

OH but if that would have been all of it! No, not for me. I had to hit the jackpot and my kid would also have ADHD, tons of anxiety, and years of depression. Anger management over not being “normal,” more broken bones thanks to hyperactivity, and a fear of playing; because when he plays he fractures.

Public school begins with more paperwork. We instututed a 504 Plan for my medically fragile child. That wasn’t enough. It didn’t take long before the school was “suggesting” medication for the ADHD. So educational assessments were done and the 504 Plan was changed to and IEP: Individual Education Plan. I was a Licensed professional therapist, a social worker, but who was there for me? Who helped me with all this new paperwork, assessments, tests, etc?

No one.

Cuz I’m also a single mom. A single mom with my own disabilities. On my own.

Then when he was in 4th grade he fell 10 feet off a garage. He broke his back in 2 places and punctured a lung. Try watching your heart being flown on a helecopter 4 hours away from you to an emergency Children’s Hospital! My heart, my child, unconscious flying away.

DSM-5 Criteria for Diagnosing Generalized Anxiety Disorder

After those 6 frantic days ensued a year of medical appointments and me, alone, lifting him, turning him, carrying him; while I had 5 herniated discs of my own. Driving 8 hours once a month to see the specialist. Dealing with his pain, and the school being an unnecessary extra pain in my back side.

By 6th grade the school decided they didn’t know how to deal with him. Do what schools do: label the child difficult. His grades were failing even though his intelligence is above average. I made the plans for his IEP because his special education “teacher” didn’t know how to do it right. They sent him to In-School Suspension when he was having an anxiety attack for Pete’s sake! So many things were going wrong, so I threatened to sue the school.

So Much Paperwork for New Professional Job Fields — Steemit

It shouldn’t take threats to get what you need for your child. I took him out of public school and enrolled him in a Charter school. Low-and-behold he became a person. He was no longer just a number and some labelled terms on forms. OH, it wasn’t easy. He still made our lives a challenge, but what the public school labeled as failing he was now getting good grades and making friends.

Not perfect A’s. He still needed a LOT of special education assistance, but he had happy moments for a change. In 10th grade he even had a girlfriend! I had a bubbling busy house full of teen boys that made me laugh for days. Ah, could he possibly see a future on the horizon?

A young man is supposed to start his independent life at age 18, after graduation. My son was headed in the right direction. He had a part time job working with computers, his love. He had a good bicycle and friends. He will never drive a car, but he was on his way!

Then the real world decided it needed to stomp us down again. The disease roared to life and he suddenly became a shell of himself. Living his days in extreme pain and inability to be mobile, he lost his job. He tried this that and the next thing to get better, but he’s not going to get better.

Understanding Chronic Pain

Without me he would be living in a box on the street, but I will never allow that. His depression and anxiety is now through the roof, as is his daily levels of physical pain. I’m trying to get him on SS Disability, but the “system” seems to think that due to his age he should be able to work. How can they not SEE the boy who so wants to be a man, but he can’t catch a break?

22 years old and I’m still in charge of his life. I have my SSDisability and my own difficulties, but being his advocate is never going to end. I love him to the ends of the universe and back, but how much do I give of myself and never get help for?

Mom’s never stop.