The Note Many Special Needs Parents Have in Their Back Pockets

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Life goes like this: Grow up, get married, have kids and then live happily ever after, right? Well, somewhere in there, life gives us a reality check.

When MaryEllen and Kevin were young, we were told to not expect them to live past 2 years old. When we got past that hurdle, two years became five, then 10. Why we’ve been blessed with all these “extra” years with them, I don’t know.

Woman and her son. Yes, doctors don’t know everything and they are not God. But they do know children like MaryEllen and Kevin are more likely to have complications like pneumonia and seizures that could have devastating consequences. Is this bout of congestion going to lead to pneumonia, then hospitalization, then never getting better? Was that seizure something I shouldn’t have taken lightly because it caused enough brain damage that would never get better? Like a note that is scribbled and stuffed in a back pocket, these thoughts are always there. We march on day to day, though, living in our rosy world of another tomorrow.

We’re not alone. Many families carry that note around in their back pockets, too. Families in the special needs world know all too well the fragility of life. In our small circle, we always know loving parents whose child is ill, on hospice or constantly in and out of the hospital. It chips away at my heart, knowing that our family could easily be “the one.”

To all the families we know who have gone down the path no parent ever wants to travel, please know through your stories and loving dedication to your children, I love my children more. I take the advice you give — the same advice you all share after losing a part of yourselves. I hug my children more, love them more and appreciate them more every time I hear your heartbreaking news.

Know that I am always thankful for another day because I know you didn’t get one. You and your children have taught me so much. Thank you.

That crumpled note has good advice for all of us. I pull it out, and through the wear and tear of life and back pockets, I can clearly see: “Dear Mom, Love me today.”

Woman and her daughter and son, who are in wheelchairs.

 This post originally appeared on The Heartful Mom.

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When Santa Snubbed My Daughter on Her Birthday

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We spend MaryEllen’s December birthdays at the local mall shopping because it’s her favorite thing to do. She loves the feeling of all the new outfits draped over her as we provide enthusiastic descriptions of each one.

“MaryEllen, this one has love written all over it! You will look great in it!” IMG_4001 (1) “MaryEllen, feel these pajamas! Wow, they are so soft, aren’t they?”

IMG_4005 “MaryEllen, all the girls are wearing these! They’re perfect!”

IMG_4006 This is her favorite day of the year, and I try to make every birthday full of life and fun — especially since every birthday is essentially an extra one. That year, she turned 27. That marked 25 extra birthday celebrations for us, according to what we were told to expect when she was a baby.

So, it was only fitting we’d end the day with a visit to Santa. Even at 27, MaryEllen had a childlike love for Santa Claus. As soon as I mentioned Santa, she was giddy in her wheelchair, her face lighting up like a Christmas tree.

Lucky for us, there were no lines and we would quickly be at Santa’s side in no time. We fed off each other’s excitement, saying “Almost there, MaryEllen!” as we wound through the empty queue.

Having done this for many years, I knew the camera system at the mall wouldn’t accommodate us. MaryEllen and Kevin have poor head control and to take a photo, I have to take it from above. The mall camera takes photos at Santa’s eye level. For us, that would result in awesome pictures of the kids’ tonsils.

As we entered the photo area, I asked Santa if I could take pictures with my phone, explaining that the mall camera wouldn’t be able to take a good photo. “You can take a picture of the scene,” Santa said, as he rushed by MaryEllen and Kevin, not even acknowledging their existence. Shocked and still unsure of what just happened, I snapped a photo of the kids minus Santa. IMG_4002 I persisted though, and Santa did go back to his chair for a photo. IMG_4003 It was evident that he was uncomfortable. There wasn’t a “Ho, ho, ho” or a “Merry Christmas.” It was as if the kids didn’t exist. We left, saddened by our visit, but determined to end MaryEllen’s birthday shopping spree on a good note.

Upon returning home and contemplating what had happened, I decided to call Santa headquarters. I didn’t want this to happen to other families. After many messages left and no return calls, I posted our story online. It quickly went viral and I was contacted by news outlets. We were assured things like this never happen and certainly would never happen again.

And this is how the Christmas spirit was born that year. We were contacted by two teachers whose students wanted MaryEllen and Kevin to be their guests at their high school’s Festival of Trees. Santa would be there and he wanted a photo session with my kids! We couldn’t wait to meet the teens who had such compassion. The day arrived and we were greeted at the school by a serenading choir leading us down the hall to a waiting Santa Claus, the real Santa Claus! Our hearts were full and my tears were flowing. This group of teens, who didn’t even know us, adopted MaryEllen and Kevin and showed them love and acceptance like we’d never seen before.

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This is how it should be, mall Santa.

This post originally appeared on The Heartful Mom

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11 Dos and Don'ts for People Who Pass My Special Needs Family in Public

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If going out in public with my children, MaryEllen and Kevin, were an Olympic sport, I’d take home gold. They were both born with Warburg Micro Syndrome, which makes getting out the door an almost unimaginable task. But like a true dedicated sports professional, after years and years of practice, I’m just good.

I can toss together vents, pulse oximeters, feeding tubes, wheelchairs and a million supplies like a boss. I make sure oxygen tanks are full, the van has gas and then get everything (plus kids, nurse, helper and me) to fit inside.

That’s the easy stuff, though. I should really get awarded for living with the stares and pity looks. Wherever we go, people are uncomfortable. It’s really OK, I understand. After 28 years, I’m accustomed to it. But if you really want to know what to do when you see us, here are some Dos and Don’ts:

DON’T :

  1. Don’t go all the way to the other side of the aisle, street or hallway like you’re going to catch the wheelchair disease. It’s really not contagious!
  2. Don’t look at us, then look down, then look again, then look down. We can see you, and you look funny!
  3. Don’t give that tiny little quarter-smile thing as you rush by. Give us the whole smile, and we’ll give you a whole smile back!
  4. Don’t pull your children closer to you when you see us. We won’t take them, promise!
  5. Don’t pass us by and then turn around to look. We really look better from the front. It makes us feel weird when you’re looking at our butts.
  6. Don’t just stare and stare and stare and stare and stare.
  7. Don’t have that shocked, big-eyed look on your face. Please. It makes my heart beat faster, and I’m at that age when heart attacks can happen at any time.
  8. Don’t say, “Ahhh.” I don’t know what to do with that, in all honesty. Is it good, bad, pitiful, indifferent? That one confuses me, so and I might say, “CHOO!” back.
  9. Don’t say, “How do you do it?” I’ll keep you there for 7,687 days telling you!
  10. Don’t say, “You’re amazing.” Even though I am, it’s for a million other little reasons. Pushing a wheelchair is not that difficult.

DO :

  1. Do say, “Hi!” Or, “Hello.” Or, “Good day.” Or, “Aloha!” Whatever floats your “daily greeting” boat.

See you out there!

a mother posing with her son

A version of this post originally appeared on The Heartful Mom.

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Dear Employers, I've Been Afraid to Tell You This. Until Now.

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Dear employers,

I’m confident I can nail the interview. I know I deserve the job. When I walk in, I’m all smiles and confidence on the outside. But on the inside, I’m scared to death because I’ve never been completely honest with you.

Yes, I’m an excellent sales professional. Yes, I’m great at identifying opportunities, making warm and cold calls, managing the sales process, developing a pipeline of opportunities, identifying the decision maker and closing the deal. My resume is diverse but solid. I look the part, all dressed for success in my professional-but-trendy business outfits. I’m the whole package. I enjoy doing what others say can’t be done. And I love every minute of it. This is all true.

But some days I just do not feel very well.

Kerri lying in a hospital bed with her eyes closed, giving the thumbs up During the interview process, I feel a bit like a fraud. I ask you things like, “Do you offer a flexible schedule to accommodate personal appointments?” I try to give you clues that I’m not your typical 8 a.m.-to-5 p.m. employee. You say what most sales managers say when interviewing a potential new hire: “As long as you’re meeting your numbers, we don’t care how you spend your time.” An interviewer once said the following statement: “This may not sound good, but we just want to hire someone who’s normal.” We both laughed, and I said “Well, normal is relative after all,” as I shifted uncomfortably in my seat. (They later clarified that they really just wanted someone who fits in with the group, but it’s hard for me not to take statements like that personally.)

Normal for me means living with a chronic but invisible illness.

I have something called Chiari malformation (CM) and syringomyelia. I likely have some other related conditions: Ehlers-Danlos syndrome (EDS) and Dysautonomia, for which I’m currently being tested. I look healthy, and most people would never guess that just a year and a half ago, I had brain decompression surgery. Looks can be deceiving. Because most days I’m experiencing some form of pain or discomfort; and some days, I have to muster all my strength just to get out of bed.

A close-up of the back of Kerri's head, partially shaved and covered with medical gauze I’ve been doing pretty damn good in life for someone whose brain had been squished out of her skull and into her neck, causing damage to the brainstem. I’m a strong individual. Despite the pain, brain fog and all the other weird and at times fleeting symptoms, I’m still living my life. I’m not only a sales professional, I’m also a wife, mother, writer and advocate.

It’s not always easy. I have days when I’m so down, I don’t know how I will ever get up again, and so I allow myself a pity party, get some sleep, and guess what? I get up again. Get up, dress up, show up and never give up. This is what I try to do. 

I want to work. I’m willing and able to work, but what I do need from you is flexibility. What’s most important to me is that you understand that my chronic illness is never off the clock. I live with it 24 hours a day, seven days a week.  

Many others like me exist, only some of them are not able to work at all. They may be on disability or relying on help from friends and family. I’m lucky because the work I do can be done in a flexible manner for the most part. But for those who are not in sales, who are maybe laborers or in a service position, less options exist. Many of these individuals want to work, but so few organizations will make accommodations for people like us — people who look fine on the outside but are in pain on the inside.  

I’m sorry I don’t tell you all of this during my interview or before I accept a position. But if I’m completely open and honest, I have to wonder, would you still offer me the job?

I know you want to hire someone who’s normal.  

I’m normal for me… normal is relative after all. 

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.

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Special Needs Dad Allegedly Fired for Objecting to the 'R' Word at Chili's

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Last week, Bruce Casper was fired from his job at a Chili’s restaurant in the Pittsburgh Mills Mall in Tarentum, Pennsylvania, CBS News reported. His girlfriend, Crista Miller, says it was because he complained to management about employees using the word “retarded.”

The couple has three children together and their youngest, a 16-month-old toddler named Kyron, has Down syndrome.

After Casper complained about the repeated use of the word, he was allegedly told to leave if it bothered him. When he returned for his next shift, he found that it’d been covered.

Miller turned to social media to express her outrage over the events, posting the following to Facebook:

Please share: Chili’s in the Pittsburgh Mills thinks it’s OK to use the word ‘retarded’ and call people ‘retards’ (management and employees). Bruce has brought the use of this word up time and time again even requesting a meeting regarding it, and nothing was done. Yesterday, he was called a retard again in front of management and when he made it clear to everyone near that our son has Down syndrome and he will not tolerate that word, management said, ‘You can leave then.’ So he did. He went in today to work his shift and they had his shift covered. In two years he has called off maybe three times due to a surgery he had and two that our son had. He’s never late and he goes in when others call off or when it’s asked of him. Apparently hate speech is allowed and even defended there… I would not call that place ‘family friendly.’ This is disrespectful to not only my family but everyone who knows someone with Down syndrome or has Down syndrome themselves!

Casper, who has been advised by a lawyer not to talk about the firing, was offered another job at a different Chili’s location but declined, as he no longer feels comfortable working for the restaurant chain.

One of the managers has used the word ‘retarded’ just in conversation, which is completely inappropriate,” Miller told CBS News. “Not only for Kyron but for all kids with special needs, whether it’s Down syndrome or something else. There’s a right and there’s a wrong, and this is wrong.”

Get the full story in the video below: 

RELATED: A Letter to Chili’s From the Mother of a Child With Down Syndrome

A spokesperson for Chili’s Restaurants said in a prepared statement that these allegations are being taken seriously, and they are currently investigating the incident, according to the CBS News.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.

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The Unexpected Gift This Teacher Received for His Son With Special Needs

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Our son, Andrew, is 8 years old and has mild cerebral palsy. He’s undergone huge improvements with alternative medical treatments, but the insurance industry won’t cover any of the costs. We have to pay an average of $750 per month out of pocket for Andrew’s local treatments and up to $20,000 each summer for his intensive treatments from a specialist out of state.

dad with son in hospital

Andrew’s awesome daddy is a public school teacher who works extremely hard at three teaching-related jobs. One is full-time, the other two are part-time. He does this to provide for our family and to pay for Andrew’s expensive and ongoing medical needs. But as we all know, teachers aren’t paid what they are worth. I had to leave the workforce in order to meet Andrew’s needs and demanding schedule of near-daily doctor and therapy appointments.

We’d been working very hard on various fundraisers for Andrew’s medical treatments for months, but our efforts weren’t providing anywhere near the donations we needed. We still needed to raise more money — and soon.

One Sunday in early May, I posted another plea for donations on local Facebook community pages. I said in the message we still had to raise $9,659 for Andrew’s medical treatments by June 1 in order to provide him treatments this summer without going into serious debt. That week also happened to be Teacher Appreciation Week.

Four days later, this happened: A student came into my husband’s classroom with an envelope. My husband wasn’t this student’s teacher, nor had he taught the student’s sibling. We didn’t know his family. The student said he had a Teacher Appreciation Week card for my husband and a gift from his family. The gift was a check for $9,659, which was exactly what we still needed for Andrew’s summer treatments. We were blown away to say the least.

portion of a letter

What this generous mother didn’t realize is that she also gave me extra gift along with her check. I was planning to set up a donation table every Saturday night in May at a local car show. The following weekend was Mother’s Day weekend. I would have spent Mother’s Day eve, as I have the last few years, alone at my donation table, very humbly accepting donations for our son’s summer medical treatments. I would have been away from my son. Thanks to this beautiful gift, I didn’t have to do that. I spent the rest of my Saturdays in May preparing for our summer medical treatment trip with my family. This caring mother also gave me the beautiful gift of time and togetherness with her generous donation.

portion of a letter

To the family who gave this gift, I don’t have the words adequate enough to express our profound thanks. Thank you for choosing to see this need and stepping up in the most critical way at exactly the time we needed someone to do so. You— and I believe God’s love through you — have been forever imprinted into our hearts. Thank you!

For more information about Andrew’s medical treatments and journey, please visit Pray for Andrew.

To read a news story about this amazing gift, visit 12 News.

A version of this post originally appeared on Pray for Andrew.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) 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.

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