To the Parent Hosting Your Child’s Party, From a Special Needs Mom

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This parenting thing is a lot of work, isn’t it? I hear you. Doing the laundry, preparing the meals, trying to keep track of school commitments, making sure homework is done, keeping up at your job, fixing what breaks – it’s really too much. To think that on top of this you’ve committed to hosting a birthday party is truly miraculous. The selfless act of taking on more just to give your child a special day – that’s remarkable.

And I get this, too – your child is growing up really, really fast. You’re aware the years are ticking by, and it feels like the window to create special memories is closing. You’ve been given a precious gift, and you want to slow down for an afternoon to let him be the focus of a special day. Let him be the recipient of presents. Let him blow out the candles. You are completely in love with this human being and the thought of celebrating him makes you happy.

So with some hesitation, I ask if you might invite my child with special needs to the party. I imagine the first thing that may come to mind is that you don’t know a thing about Down syndrome, or autism, or G-tubes or wheelchairs. You’re completely stretched already – how can you possibly accommodate that? And why should you have to make any accommodations at his birthday party? Wouldn’t this be disruptive to your other guests?

Well, here’s what I also know – you have hopes and dreams for your child. In no time at all, he will be out on his own, navigating the world. He’s going to get a job, have coworkers, live in a city apartment or suburban house, with new neighbors. He may take public transportation or carpool. And he is going to come across my child, also an adult, and many people like him. And your son will know what to do. He will remember you showed him that people are more the same than different, and he will remember birthday parties where you taught him to be inclusive. He will be successful and well-liked, and he will have opportunities to lead others, because he’s set an example of respecting everyone.

So this year, I ask you to consider giving your child this birthday gift – a gift that prepares him for life. Show him what inclusion and respect look like. Show him how to interact with people of all abilities. Show him how to be a leader among his peers. And I will help you. Ask me if there’s anything you should know before my child arrives at the party. And I will tell you. Because I want your child to be a leader in this world, too.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] 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.

Lead photo source: Thinkstock Images

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CEO Who Jacked Up Life-Saving Drug’s Price Responds to Internet Outrage

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The Internet isn’t just a place for cat videos and online trolling — it’s also a place where people’s voices can be heard.

Folks from all over have been expressing outrage online after a pharmaceutical company increased the price of a life-saving drug by more than 5,000 percent. The drug, Daraprim, was purchased by Turing Pharmaceuticals, which raised the price over night from $13.50 per tablet to $750.

The company’s CEO, Martin Shkreli, a former hedge fund manager, has come under heavy fire for his actions on social media this week, despite his claims that funds from the increase would go towards medical research for a more effective version of the drug. Medical experts have said there’s little need for a new version of the drug that’s been effective for more than 60 years, The New York Times reported.

Daraprim is the standard of care for treating a parasitic infection called toxoplasmosis. It’s used to treat malaria, women who become infected during pregnancy and also for people with compromised immune systems, like AIDS patients and certain cancer patients, according to The New York Times. The price increase brings the annual cost of treatment for some patients to hundreds of thousands of dollars.

After receiving criticism, Shkreli announced Tuesday, September 22, that he will lower the cost of the medication, NBC reported. Although he has not specified what the new cost will be, Shkreli said the decision to lower the cost was a reaction to the outrage expressed.

Yes it is absolutely a reaction — there were mistakes made with respect to helping people understand why we took this action,” Shkreli told NBC. “I think that it makes sense to lower the price in response to the anger that was felt by people.”

Get more on the story from the video below: 

 

The incident has sparked discussion over high drug increases, with the Infectious Diseases Society of America and the HIV Medicine Association sending a letter to Turing Pharmaceuticals this month calling the price increase for the medication “unjustifiable for the medically vulnerable patient population” and “unsustainable for the health care system,” The New York Times reported.

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The Group of People We Don’t Include (but Need to) in the Vaccine Debate

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There has been a lot in the news lately about the anti-vaccine movement. At the crux of the debate is whether vaccines cause autism, and whether vaccination should be a personal choice, or something that is required by law. I feel one group is never represented in these stories — people who already have autism. What does that say to people on the spectrum, and what does that tell society about them? If I was not on the spectrum myself and had no experience with it, I would think these people were completely worthless, that autism is the worst thing that can happen to a person. That is not the case. There are amazing people on the autism spectrum.

When we debate the validity of vaccination, I believe we also debate the validity of their lives.

Some people will say yes, we must vaccinate — it stops diseases like the measles. If not everyone vaccinates, you can still have outbreaks of these types of illnesses. An example would be the measles outbreak at Disneyland in 2014. Other people don’t want to vaccinate because they worry about what it might do to their child, and they want to have the personal freedom to choose.

There is a third group here that gets nominal acknowledgment, but that is not considered important enough to have a voice in the debate — people with autism. The anti-vaxxers claim that vaccines can cause autism. I’m not going to refute whether they do or not, because I think the truth is clear, and people will have their opinions regardless. What I will say is that we are putting down a whole group of people by saying, “Look how terrible it is for them to being this way” without letting them have a voice in the debate. If we did this to women, gay people, Muslims, Hispanics or African Americans on any issue, there would be outcry. And rightly so. So why do we think nothing of doing this to people with autism?

Autism is a spectrum disorder, so it occurs and presents differently for different people. Also, people who are on the autism spectrum who are adults can be very different from who they were as children. There are some highly successful people with autism and more importantly, there are many people with autism who live rather normal lives, just like anyone else.

So the question seems to be, “Is having autism worse than having the measles?” Measles has been an epidemic for centuries. In 1912, the United States required physicians to start reporting measles cases. According to the Los Angeles Times, a study done in the U.S. showed that from 1912 to 1916 for every 1,000 measles cases, 26 people died. That does not seem too bad, except for the fact that almost everyone caught the measles at some point. One of the reasons almost everyone had it was because measles is an airborne disease which usually spreads faster and is harder to contain.

Initially, there were some side effects of the measles vaccine, such as pneumonia and encephalitis (swelling of the brain). Today the measles vaccine is grouped with vaccines for mumps and rubella in a vaccine known as the MMR. The CDC states that “most people who get MMR vaccine do not have any serious problems with it.”

I will not disagree that autism can be a debilitating condition. But it can also bring great insight. I know I have struggled and learned to live with autism, even using some of its effects to my advantage. So is having the measles worse than having autism? For those who already have autism, this question does nothing but show how society thinks of autism. And that would appear to be not highly. We need to remember that people with autism are first and foremost people.

Follow this journey on Jason’s Connection.

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Jamie Brewer, Actress With Down Syndrome, Shares Advice for Madeline Stuart

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Jamie Brewer is an actress with Down syndrome best known for her roles on the television show “American Horror Story” and for her historic walk down a runway in February 2015, where she became the first person with Down syndrome to walk in New York Fashion Week.

On the Emmys red carpet on Sunday, September 20, Brewer talked with Popsugar about her work on “American Horror Story” and how fear can be a useful tool. She also had a special message for Madeline Stuart, the model with Down syndrome who has followed in Brewer’s footsteps to recently rock the runway at New York Fashion Week.

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Jamie Brewer: Marc Hall / Carrie Hammer Fashion Show, Madeline Stuart: Courtesy Rosanne Stuart

Continue to try and to embrace fear, and to really show who you are through that,” Brewer says in the video below, “your true, true voice will come out.”

Brewer and Stuart have met once before, Madeline’s mother, Rosanne Stuart, told Cosmopolitan. They met in Los Angeles after following each other on social media for several months.

Watch the whole interview with Brewer in the video below:

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When I Tried to Save My Hair With Dry Ice and a Pantyliner

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I stared at the screen, numb, while my husband tried to explain again the surreal website he found.

“You put these ice caps on your head during chemo,” Gary said, “and then you won’t lose your hair.”

I scrolled down and saw women who still had their hair after chemotherapy. 

“Look at this one,” Gary guided the curser to a beauty with silky black hair.

But I was still reeling from my diagnosis and couldn’t get my head around going bald — or of freezing my head — or of having cancer. I was perfectly healthy. A bit of a health zealot, in fact.

“How does it work?”

“Well, we’d have to rent these caps, these blue ones, see?” He pointed to a gel pack shaped like a helmet.

“We’d freeze them with dry ice, and we’d put them on your head on chemo days. Look,” he said again, his finger on the screen, “they have velcro straps to keep them on tight. Chemo meds wouldn’t be able to circulate on your scalp, because your scalp would be frozen. And then you wouldn’t lose your hair.”

It seemed like we just found the almond in my breast — the almond that grew to a walnut in a couple week’s time. Now I was talking about freezing my head.

“It sounds miserable. Does it work?” I asked.

“Might be worth a try,” he said.

I asked him how much it costs.

“Well, it’s a little pricey. They rent the caps for $900 a month. Let’s see, you’ll be in chemo for five months. Look, don’t worry about it, we can afford it.”

I thought, good God. Who spends that kind of money on hair?

“I can get a wig and I’ll be fine. Maybe I’ll use the bee hive your mom has in her closet.” A dusty hat box at my mother-in-law’s held a weird styrofoam head with a pile of hair untouched since 1962.

“You should do it,” Gary said over my shoulder. “Keeping your hair is going to make you feel less sick.”

I kept reading. The caps couldn’t be allowed to warm up or they wouldn’t work. They have to be stored in a commercial freezer before chemo begins and then layered with dry ice in a cooler. Plus we would need a laser thermometer, insulated gloves and a gas mask. None of these supplies were even available in my rural community. The whole idea was beginning to look logistically impossible.

Was it worth it? What kind of lesson am I teaching our daughter? Should Lauren watch me fight for my hair or lose it with dignity?

“Your recovery will go faster if you don’t lose your hair.” Gary had his credit card in hand.  “Let’s try it.”

“I suppose it’s worth a shot,” I said in agreement.

Gary ordered supplies. Since I hate math anyway, I didn’t add up the total and told myself we could afford it.

“Get this!” Gary said, reading a blog. “You’re supposed to cram pantyliners under the cap at your hairline to prevent frostbite. Can you believe that? Pantyliners?”

“Medical innovation meets 1950.” What was I was doing?

The next step was to find dry ice, a project in itself in my town of 900 people.

“I’ll figure it out,” Gary said. He was in problem-solving mode.

When we wheeled our coolers into the hospital, our peculiar luggage created a small scene. 

“Is that a liver?” somebody asked. 

“And a few beers,” Gary flipped back. I giggled at the guy’s expression.

While nurses got my chemo ready, Gary put on his gas mask and opened a cooler. Steam rose up like a cloud over a witch’s cauldron, dry ice mixing with the stale air of the hospital. His gloved hands grabbed a cap covered with thick white frost. We wrestled it onto my head, synching it tight with velcro.

The shock nearly made me vomit, and I instantly understood the warning about frostbite.

“Hand me a pantyliner, will you?”   

Gary had brought me an electric blanket and a coat, but I was shivering. Twenty minutes later, he whipped off my cap which had cooled to minus 15 degrees. Ironically, chunks of my hair got caught in the velcro, ripping out precious strands. 

“Hmmm, we’ll have to figure out a better way for the next one,” Gary said, brushing hair off my blanket. 

When he fit me into a fresh cap, I could see pain behind his smile. He hated inflicting the cold, watching me wince.

I felt the shock again, and we settled into a rhythm: Ice cap on, chat, ice cap off, replacement cap on. Seven hours later, my head was numb. I felt tentatively triumphant.

In two weeks, at my next chemo infusion, we started again.

But by the end of that session, fatigue was taking its toll. The cost was weighing on my mind, and fumes from dry ice were making Gary sick. 

A few nights later, I combed out my long blond hair after my shower.

“Hey, Gary, can you come here?”

A spoon clinked against a ceramic bowl. He must have been eating ice cream.

“What is it?”

We both stared at the sink. “Looks like a bird’s nest,” he said, grabbing blond strands off the porcelain. “The lady said some shedding would be normal.”

“Can this much be normal?”

The next morning, my pillowcase was covered with hair. “That pile looks like a cat.” I said. “A small one.”

He smiled. “Just a kitten.”

In the mirror, I could see my scalp. Pretty soon, the little bit of hair I had left was clumped in three dreadlocks, dangling from a mostly bald head. Part of me was relieved.

Maybe it’s a good thing.

As the sun went down that night, I grabbed scissors, one for my husband and the other for our daughter. “Let’s cut it.”

Lauren lit up at the prospect of adventure before bedtime and we headed to the backyard. The sky was streaky pink, and Lauren’s chubby fingers felt cool on my neck. 

“We’ll scatter it for the birds,” I said and watched my fragrant locks float away in the wind, a little treat for our feathered friends.

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My All-Too-Honest Answer to ‘What Do You Do?’ as I Recover From Cancer

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It’s not that hard of a question. And it’s one I had gotten pretty good at answering. I was working for a great school district, pulling out my degree in education and getting back in the game after being at home raising mangy boys for a decade.

It’s not like we have fallen off the face of the Earth; it feels more like we slept through a year. I have gaping holes in my memory of the boy’s sporting events, their academics in general, holidays and conversations with my husband, Brian. It’s like I had partial amnesia from December until the past few weeks.

So this simple question — asked in all politeness as the starting point of the most basic of conversations — seemed hard. Because I couldn’t find the answer.

“What do you do?”

Huge, long, awkward pause. And then, because it’s the only way I know how, I gave an all-too-honest answer that I’m sure had she and her husband planning their exit strategy.

I’m not sure I had told her. I’m healing. I’m recovering from a wee bit of cancer and trying to figure out our life again. I don’t know what I do. I’m sure she could see the wheels flying in my head as I tried to put into words our new existence. Because it does feel new. Nothing after cancer feels the same. It might in time, but I’m not relishing that moment. I love the new perspective and intimacy that has been gifted to me. I work to hold on to it.

So I sit on my couch and read Jojo Moyes novels. I sit on the same couch and enjoy my new wallpaper. I snuggle with a fat pug and a beautiful golden and make conscious decisions to save up my energy reserves so those three boys that matter most get the best of my love when they return home.

Photos. I take pictures of beautiful kids and beautiful families. Yes, I’m snapping away and earning some Target money, but I’m the recipient of a deeper joy from these images. I’m capturing life. Life and laughter and love. How I wish that I had taken the time and money to get a great family portrait while I still had hair.

Yes, for vanity’s sake. It will be years before I look like myself again. But also because our photo history is forever marked now by the before and after of cancer. And in our house, the onset of cancer brings the memory of the onset of epilepsy. And hearts changed and matured by having to muddle through too much in one year. So I wish I had taken a picture of simpler times.

I try to be more purposeful in the allotment of my physical and emotional resources. I feel overwhelmed with the repayment of the good. Yes, I understand that it isn’t a direct exchange. I will never match person for person the help that we have been given. So paying it forward will be our pleasure for now and the rest of forever.

I pray more. I read my Bible more. I pray out loud for my kids while I embrace them more. I want them to hear the promises I know to be true for them. I can’t handle if one other person gets sick or injured in my home, so I ask God extra hard for these things. Huge guardian angels around my boys and that dog with a very small brain who is a danger to himself.

It won’t be like this forever. Six months from now I will really need a better answer. But for now this is enough.

Heather Koelling the mighty.1.jpg -001

Follow this journey on the “More to Learn” Facebook page.

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