Community Voices

So, as I predicted, exactly a week off of oral steroids, my hand eczema has returned. I have painful blisters both just coming up and in large fully formed clumps. I hate it. I was reminded while researching that the kind I have is notoriously hard to get rid of and has no triggers. It just does whatever it wants. I’m frustrated and sad and annoyed and angry all at once. I had completely forgotten during my two weeks of blissfully clear skin what it was like. So now I’m snapped back to reality.
I know it sounds like I’m just complaining a bunch, and that’s because I am. In real life I hardly complain about it unless it’s really bad, this is where I vent, because I know there are people who understand me here.

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Community Voices

Over 50's Group

<p>Over 50's Group</p>
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Community Voices

What is the one thing you wish other knew about Fibromyalgia?

<p>What is the one thing you wish other knew about Fibromyalgia?</p>
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Valli Gideons

Cartoon: Things That Happen When Your Kids Have Cochlear Implants

This is a cartoon that adds a dose of brevity to the struggles of parenting children with cochlear implants and other hearing devices. My friend, Adrienne Hedger, and I collaborated to make the cartoon: Description of cartoon: Things that Happen When you Have Kids with Cochlear ImplantsInspired by: Valli Gideons @ My Battle CallCartoon by: Hedger Humor Slide One :You are constantly searching for the pieces.Here, a mom searches on a seat cushion of a chair shouting, “Where are they?” Silde Two:You accidently connect the pieces incorrectly and don’t realize it for a day.Daughter waits patiently while mom is struggling with pieces of hearing device and thinks, “Um, oops.” Slide Three:You invent songs and dances to get kids to wear them.Mother and child are dancing. Singing, “Let’s wear our ears, oh yea!” Slide Four:You try to have your kid wear them in the car.Mom driving, seen telling her child in the back seat saying, “No, don’t take them off. Leave them on.” Child proceeds to toss them across the car. Slide Five:Some conversations are like:Mom says game is at 6 p.m. Kid replies, “What?” Mom repeats herself. Kid says, “Huh?”Mom exclaims, “Are you even wearing your ears?” Slide Six:It is so rewarding when your kid finally gets it.Kid surprised says, “Mama, I gotta keep these on so I can hear.”Mother excitedly says, “Yes. Exactly.’

Community Voices

GAP jeans / Adidas forced collaboration

<p>GAP jeans / Adidas forced collaboration</p>
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Renee Bergeron

Parenting a Child With Fetal Alcohol Spectrum Disorder

Our 13-year-old son was adopted at the age of 4 weeks old. We knew he had been exposed to alcohol throughout the entire pregnancy, but we were optimistically hopeful that he would escape the effects of alcohol. He was diagnosed with static encephalopathy alcohol exposed (which falls under the fetal alcohol spectrum disorder umbrella) at age 2 and a half. This is our story. Fetal alcohol spectrum disorder (FASD) can manifest itself in a variety of ways, person to person. At its core, it is permanent brain damage caused by prenatal alcohol exposure. Here are just some examples of what we deal with on a daily basis. Imagine: Telling your child he can’t have a granola bar. This sets off a four-hour rage that ends only when he throws a rock hard enough at the van to shatter the back windshield. The child doesn’t understand why you’re upset. It’s not his fault. He didn’t mean to break the window. It just meant to throw rocks at it. The child never “owns up” to breaking the window because he truly sees it as an accident. He cannot see that he caused the broken window. Imagine: T elling your child to clear the table, his one and only household chore. He might do it. Or he might knock down chairs, throw any small item within reach and go to his room and scream for an hour. Imagine: Early in 2015, my son with FASD had an appointment at the children’s hospital. They asked his birthday. After thinking for a moment, he finally came up with September 3. When asked the year, he couldn’t answer. I told him he was born in 2002. Now more than six months later, if asked when his birthday is, he answers “2002.” Because that was the “right” answer once, he is convinced 2002 is the answer. Why has this one answer stuck when it takes him so long to lean other things? Who knows? I’m sure eventually it will fade, but right now, it’s stuck in his brain. Imagine: A 13-year-old who still mixes up the words bagel and doughnut, ketchup and syrup, watermelon and pineapple. See the pattern? Similar items…but the wrong word. These are just a few examples. Imagine: You see your child about to brush his teeth with a tube of yeast infection cream. You take it away and your child gets angry and yells, “Then what am I going to use to brush my teeth?” He remains mad at you for the rest of the evening for taking away his “toothpaste.” He can’t see you were protecting him from using yeast infection cream. He only sees you asked him to do something (brush his teeth) then got in his way when tried to do it. Imagine: Your son looks perfectly “normal.” One good days, there are giggles and laughs. He does his homework. He joins the family for dinner. He goes to school. His teachers expect him to do his work and to participate in class. And on a good day, he does. Imagine: A 13-year-old son who still loves to cuddle. Who is very affectionate and well attached. Who can out-Lego and out-puzzle my kids with no special needs. Who is an artist. Who is great with animals and babies and toddlers. Who is creative. Imagine: More “bad” days than good ones. I don’t share these stories to demean my son. He is fiercely loved and we offer him all the support we can. I spend many hours every week advocating for him in the form of phone calls and mountains of paperwork. I share this so you can get a glimpse of the realities many parents of alcohol-affected kids are living with. The world doesn’t understand fetal alcohol spectrum disorder. The behaviors my son exhibits are not rebellion. They aren’t something more love, or more discipline, or more rules or fewer rules are going to solve. His brain was permanently affected by the alcohol his birth mother consumed during her pregnancy. Nothing can change that. He can know something one day and forget it the next. It is called being on the fetal alcohol spectrum. My son is handsome and strong. My son is the face of fetal alcohol spectrum disorder. Follow this journey on Little Earthling Blog. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Alecia Coleman

Do You Know What the Laws Are In Your State?

Do you know what would happen if a school employee were to harm your child intentionally while in the care of the public school? Do you? I assumed I did also. If you check the laws in your state, you may be shocked with what you discover. At the end of the last day of school before Christmas break, I picked up our 5-year-old son up from the after-school program at his elementary school. He and his principal were walking the school hallways. He had a meltdown over a toy that had been taken to show and tell that morning and needed time to calm down. Once buckled in the car and on our way home, I asked how the rest of his day had been, as I ordinarily do. He responded, “Well mom, they tried to kill me!” Chuckling to myself, I nearly dismissed this as some 5-year-old dramatics, but then he spoke the words that made me listen: “she saw it, she said ‘we can’t do that,’ but the other girl still did it.” It felt like time stopped for a moment while I was processing this, and our quick drive home felt much lengthier. Arriving at home, I knelt on the living room floor to be more on his level. I requested that he demonstrate exactly what had occurred. With his teenage sister watching, he wrapped his little arms around my neck from behind and squeezed tight. This movement must have exposed his neck from behind the collar of the polo shirt he was wearing because my daughter’s eyes got wide and she exclaimed loudly, “Mom, he has red marks on his neck!” He did indeed have red marks on each side of his neck. Then it hit me: a grown woman had put my 5-year-old in a choke hold because he was having a meltdown. A second adult witnessed this action, yet did nothing to stop it from occurring. While attempting to get my partner on the phone to inform him of the situation, I loaded my children and my daughter’s boyfriend into the car and returned immediately to the school. I managed to stay calm while I met with the principal and informed her what had occurred. She sank silently and gradually into her chair, her eyes enlarging while she was processing what my son voiced to her had happened, and she informed me that she would review the video and contact me before leaving for the evening. The call never came. Consequently, the next morning I filed an official complaint with the school superintendent’s office via fax, simultaneously filing the first open-records request to assure that the video mentioned did not merely vanish. Later that day, an officer phoned me on my cell while I was at work. He and two social workers “happened to be in the neighborhood” and they asked to drop by our house and interview our son about the events, naïvely I agreed, though neither of us was home. Our son was spending his day at home with his grandmother playing while we were working, and we hadn’t even mentioned the event to her until five minutes before a police officer and two social workers were knocking on the door. Two weeks later, the children returned to school and we were informed that social services had accepted the case for investigation. Accordingly, we were told no one with the school system was permitted to even discuss the event with us. As a result, we had to hire an attorney to get a meeting with district personnel. It was essential to us that we had assurance our child would be safe and to know what their plan was to prevent this from happening again. We felt the school needed to assure us that the individual in question would not have any contact with our child pending the official investigations completion. Eventually, the attorney for the school system responded to the attorney representing us and she forwarded the email to me. The tone was dismissive, and the attorney gave the impression that she felt our request was a waste of her valuable time, indicating “disciplinary action had been taken,” and that we should be satisfied with that. Copying both attorneys with my reply, I asserted, “I am sure we are all aware that disciplinary action can be anything from a verbal warning to a termination. That is not an acceptable response. Something happened to our child while in the care of the public-school system. Someone will explain what is being done to prevent this from happening again.” Our son has disabilities, nevertheless, we assumed we had done everything possible to protect him in the public school. Relocating to this neighborhood specifically for the school zone. Requesting an evaluation be done by the school system and an IEP in place for him on his first day of kindergarten. To our astonishment, we were advised that an IEP does not transition automatically to the after-school program. The school’s attorney notified us that as it was an entirely separate program, there should have been a 504 in place for the after-school program in addition to the IEP he had with the school. Despite our hours of research, we had never happened upon that information. When a 504 was requested for the after-school program, we were informed that a student could not have both, an IEP and a 504. Thus, it appears that even the professionals don’t know what the rules for this are either. We’ve had to schedule another meeting with our attorney present to acquire a 504 for the after-school program. We have filed six or seven open-records requests with various agencies and divisions thus far to obtain a copy of the incident report. The reply we received from social services was, “you are not entitled to that information.” Summarization, something happened to your kindergartener while he was in the custody and care of the public-school system, and you are not entitled to know what that was. Surprisingly when we attempted to get a copy of the police report, the local police department had no record of it. The officer I spoke with was nice enough to inform me that the public-school system employs their own police force handling their own investigations internally. They have obstructed us for over two months now, and the only thing we know about what happened to our son is what he has been able to communicate to us, and he just turned 6 years old. The timeline of events he can portray to us majorly lacking. Last week, a representative from the school system phoned to inform us that social services had finally closed their investigation. The school system has now been given the authorization to start their own investigation of events, therefore they needed to schedule a time to talk to our son. Under Kentucky law, if your child is intentionally hurt in a public-school setting, the school must first report the occurrence to social services and give any video and documentation to them. If Social Services chooses to step in and investigate the event, there is no requirement for them to notify the child’s parents. That is correct. The parents are not permitted to be informed of an investigation, and social services will not consent for the school system to discuss the event with the parents at all. Social workers can interview your child, without disclosing why or requiring parental permission. They may go through your child’s school records and speak with your child’s pediatrician without telling you. There is no legal requirement to alert the parents until the investigation is completed. Kentucky is also one of the few states with no guidelines on how long an investigation may be. When the investigation is finally completed, they will mail you a “letter of finding” via certified mail. Once that letter is received, there is a requirement that you sign a waiver before they will relinquish your child’s records and information regarding their investigation to you. Another discovery, if it were the other way around and child services were investigating the parents, social services would notify the child’s school and pediatrician of that investigation, but they would not notify the parents it was going on unless they remove the child. Interestingly in our circumstances, the accused school employee receives a letter informing them of the accusation and a pamphlet outlying the process that will occur. Let me reiterate: they notify the accused person and explain the investigation process to them, but do not tell the child’s parents anything. They notify the person who possibly harmed your child. The individual who could know your child’s address, normal activities or other personal information, but it is not necessary to alert the child’s parents. What if the child in question were nonverbal, how would the parents know? The only reason we were aware of this is that I was the one who filed the initial report. Imagine that a parent was not aware of an ongoing investigation and encountered the person who abused or assaulted their child while at the grocery store, or the mall. How does this system protect the child at all? Some children might even need counseling after an incident like this, but the parents do not know so they cannot contact a professional, and in our case, we don’t know exactly what even occurred. This whole system was designed to protect someone, but it wasn’t the children. There is no crystal ball to tell us what the outcome of this will be, or if we will ever see an incident report or video. Our son will not sleep alone anymore and refuses to discuss the incident with us, most likely because he knows he was wrong for his behavior. The entire process must be changed. I wonder how many more of us experiencing this ridiculousness are out there. We want to hear your story. Become a Mighty contributor here .

Becca R.
Becca R. @beccar

How SSI Makes People With Disabilities Live in Poverty

Imagine the year is 1984. A dollar went a lot further than it does today. What cost a dollar then would cost $2.47 in 2020. In 1984, the SSI asset limit was $2,000, and that amount remains the same today. In 2020, clearly $2,000 doesn’t get you as far now as it did back in 1984. With inflation of 147%, the $2,000 asset limit from 1984 would equate to $4,935 in 2020. The asset limit should be increased to $4,935 and continue to grow with inflation year after year. Experts say that your emergency fund should be large enough to cover expenses for a minimum of three to six months. According to Bizjournal, the average cost of living in the city of Milwaukee, Wisconsin was $1,657 per month as of August 23, 2019. This includes rent for a one-bedroom apartment, utilities, internet, gas, and food. So, to have a sufficient emergency fund, a person would need to be able to save $4,971 to cover the recommended three months minimum. That’s more than double the current $2,000 cap, and more than the inflation-adjusted SSI limit if it would be amended. The current asset limit effectively reduces one’s ability to hold money for savings or emergencies. In fact, the current $2,000 asset limit only allows beneficiaries to live paycheck to paycheck. Let’s also note that the income of someone on SSI in Milwaukee is only $867 per month, a mere 52% of the average $1,657 cost of living. The Federal poverty level in Wisconsin is currently $12,760 per year. Those on SSI have an annual income clearly below the poverty level ($10,404 per year). Thankfully, subsidized housing may be available for some. (I’ve been on a waitlist for close to a year and have no end in sight). Those living in subsidized housing may pay rent at a rate of about 30% of their $867 income. That leaves $607 for food, utilities, clothes, personal care, transportation, entertainment and emergencies. With that limit, beneficiaries cannot save for their future. Looking at a real-world possibility, let’s say a car breaks down and needs a repair. Will that cost more than the $600 left after paying rent each month? What if an individual is in need of a different, more reliable car? Most used cars cost more than $2,000, thus eliminating the ability to pay for both transportation and the essentials of food and housing. With the asset limit set at $2,000, people are prohibited from saving, which prevents them from ever having the chance to get ahead. Adjusted for inflation, the 1984 equivalent $2,000 would be $4,935. Reform to the asset limit will save time and money due to the lesser need for oversight at the SSA office. In addition, with beneficiaries being required to report income of over $65 each month and being penalized for earning anything higher, increasing the income limit would also reduce overhead costs of the program day to day. Increased for inflation, the $65 limit in 1984 would be around $160 today. The current $65 income limit translates to working only about two hours a week at minimum wage before being penalized. Raising the current asset and income limits now and in accordance with inflation will allow people to save money so a car breaking down will not be financially crushing. One would not have to choose between transportation and eating dinner. Being disabled is often limiting physically and mentally and financially. Being on disability benefits makes it difficult to barely even survive in 2020. The current SSI asset limit forces people to live in fear of what may come next because, at any moment, their whole world could come crashing down solely because they do not have the finances to save themselves. The year is 2020. Please stop requiring people on SSI and Social Security to live like it is still 1984. Educate those around you about how limiting the current system is. Share this story. Contact your senator and representative in Congress. Let them know how the current system prevents you or someone you know from reaching their fullest potential. With more voices that speak, maybe Congress will begin to work toward change.

Community Voices

Mid-week check-in: How has your week been so far?

<p>Mid-week check-in: How has your week been so far?</p>
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Community Voices

What time of the day do you feel most motivated to craft?

<p>What time of the day do you feel most motivated to craft?</p>
45 people are talking about this