5 Helpful Things Plane Passengers Can Do for My Special Needs Family

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It won’t be long now before it’s time for the dreaded plane ride to the hospital, the only one capable of handling our son’s treatment. After hours of packing and preparation I arrive at the gate, waiting with baited breath for the announcement:

“First-class passengers and those who require more time may begin boarding.”

I race down the jetway while pushing my son in his wheelchair, carrying a car seat, four bags, a purse and a feeding pole. I leave everything at the end of the jetway, including my son, so I can install his car seat. The stewardess greets me at the opening to check his seat for compliance. By the time I have it installed, an onslaught of people have started down the one-lane aisle. I can’t get back up. I’m a salmon swimming up stream. I have to step into a seat or hang out with the stewardess in her coffee area. On occasion, she’s been nice enough to stop the line so I can get through. Once I’m back with Jack and my things, I carry my 50-pound boy down the aisle, trying to keep his feet from hitting people in the face. I buckle him in and wait until everyone is seated to get back in the aisle.

My bags are so bulky they often hit people as I carry them through. I wish I didn’t have to take so much, but all these items are necessary: feeding tube supplies, pump, medications, suction machine, enteral formula, back up outfits, diapers, the list could go on and on. When I finally get the bags to my seat, wouldn’t you know it, all the cargo holds are full. I let the stewardess know and she goes through the holds looking for space. By the time the plane starts taxiing, everyone knows me and my son. I’m already wiped out.  

But the ride has just begun. My co-passengers who now know us by face are about to learn a lot more. For some people, the pressure of flight makes their ears pop. For Jack, it makes him poop. So within 20 minutes after take-off, my 6-year-old has concluded his business in his diaper. I’m sorry, I know it stinks. But I have nowhere to change him. So yes, everyone within a 12-foot-radius not only can see us, but can now smell us.  

Jack hates a dirty diaper; wouldn’t you? He’s non-verbal, and has two cues to let me know he needs to be changed: a high-pitched scream and hitting himself in the head unrelentingly. I can’t explain to him I can’t change his diaper. Most of one side of his brain has been removed, he’s had a stroke and his brain cells are not formed properly. He understands zero from me. So he continues screaming.  

By now my fellow passengers have seen us, smelled us and heard us.  And now the person sitting in front of us is in the position to feel us. Jack has two movement disorders, chorea and dystonia. He cannot control many of his body movements. So now he’s kicking the seat in front of us not on purpose  because his brain is sending false messages to his muscles.  

I’m so tired and self-conscious by this point I just want to lay my head back and cry.  Sometimes I do, with my son sitting next to me, hitting, screaming, kicking and smelling. I close my eyes and let the tears roll down my cheeks. This only creates another show.

Trust me, no one would like to change the behaviors, sounds or smells more than me and my son. But we can’t. While of course I don’t want to disturb my co-passengers, there’s nothing we can do about it. We didn’t choose this. Keep in mind, within minutes you’ll be done. This can not be said for us. We work 24/7, making the best out of the way things are.  

So while there’s not a lot I can do, here are some things you can do to make families like mine more comfortable:

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1. Smile sincerely.

2. Tell us we’re doing a good job making it through the flight.

3. Make conversation with me and acknowledge our children, even if they can’t respond to you.

4. Tell us not to worry, even though I will anyway.

5. Offer to help get us on and off the plane.

In the future if you see a “Jack” while traveling, try being more than just tolerant, be empathetic. It might not change the course of your trip, but it will certainly change the course of ours.  

Follow this journey on Heather Steiger’s blog

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Ask Me Any Question About Her Special Needs — Except This One

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This is a subject I’ve contemplated writing for a while now after many encounters pretty much anytime we go out to eat: my daughter, Karina’s, G-tube. Yes, I know it sounds scary, but really, it’s not. It’s actually saving Karina’s life.

Unfortunately, she cant eat through her mouth. It’s dangerous for her because of choking, aspirating and gagging. She has no jaw control and doesn’t know how to chew at all. So she gets her food in liquid form from her G-tube. I know what you’re thinking: Isn’t she hungry? How can she be healthy on liquid only? Karina actually gets more calories per day then a typical adult who eats regular meals. And as far as the hungry part goes, well, she is getting her feeds throughout the day, so her tummy is constantly full.

Now I’m going to touch on something I see all too often: Pity. Please don’t pity her. Trust me, this is saving her life and has been the best thing the doctors could’ve even done for her. She’s basically been on liquids her whole life (seven wonderful years).

daughter in a wheelchair

When waiters and waitresses see my other kids and me eating at your restaurant, sometimes they bring an extra plate so I’ll give my other kid food to eat, or they ask, “Is your daughter going to be ordering also?”

But the most famous question I get asked everywhere is, “What’s wrong with her?”

Please be rest assured, she is indeed eating. You might not see the tube because it’s hidden, or maybe she already ate before we left because of her schedule.

To the people who stare and judge and make comments in a whispered tone so I cant hear you (I can totally hear you, by the way): I’m always open and welcome to questions, so ask away. I’d rather you come up to me and ask me things if you’re curious. Ask me why she’s in a wheelchair, or why she’s not eating or what that tube does.

Just please don’t ask me, “What’s wrong with her?” Something about that question just gets to me. Maybe it’s the tone in which it’s asked, or maybe I just get too defensive with that question because to me, there’s nothing wrong with Karina. Karina is special. She’s just a little different from others.

cheryl stewart and her daughter smiling

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The 6 Stages of Grief I Experienced as a Special Needs Mom

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When you go in to motherhood, there are so many things you’re never told. You don’t know about the diapers that leak up their backs. You don’t know how you’ll learn to survive on two hours of sleep. You’re also never told that if things don’t go as planned, you might grieve.

There is shame for many of us who still have children living but find ourselves grieving. How do you grieve what’s still here? How do you not feel guilty about grieving a breathing child when there are those who’ve lost children? No one tells you grieving can be a normal part in raising a child with special needs.

I felt so alone during this process. I went through every stage, and it came in waves. Each diagnosis seemed to bring a new wave of grief. When I think back, it’s hard to believe the myriad emotions I experienced. It’s difficult to believe that within this grief was tremendous learning, tenacity and love to keep my child safe and thriving.

Stage 1: Shock/Disbelief

This was the hardest time. Sitting in a hospital with lines, ventilators and PICC lines going directly to my son’s heart, IVs galore, and sitting in stone silence. No emotions were on my face, and I remember thinking, This cannot be real. There is no way this going on with my son. I remember the hush of the doctors, and all the whispers of different medical terms I didn’t understand.

I remember the MRI coming back, and the doctor saying, “Your child has panhypopituitarism.” I was happy to have a diagnosis, but my body went completely numb. How did this possibly happen to my child? What does this even mean? How do you even process that your 3-month-old lacks all hormones in his body, may never produce his own children, will be on drugs for his entire life and may also have significant learning and development delays?

You don’t. You shut down and are in complete shock. My shock phase lasted throughout his hospital stay and well into the first months of caring for him.

Stage 2: Denial

This set in for me around month two of being home with my son, Von. I was in complete and utter denial that anything he had would make him any different than any child around him. I pushed hard for him to hit milestones, and they came and went and the milestone was always delayed. I didn’t believe he’d never be able to live off hormones. I prayed someday they would find a cure. I refused to believe his condition would affect him developmentally.

Stage 3: Bargaining/Guilt

These are two separate stages, but mine seemed to come at the same time. I felt the need to try to not only figure out how I missed it, but also felt tremendous guilt that I somehow caused the illness. I started looking for reasons for why this happened to my precious little boy. Did I drink too much coffee? Was the allergy medication to blame for his lack of pituitary gland? Did I have him at the right hospital? I kept telling myself I could’ve prevented this from happening. This could’ve been different.

I looked in every single place and direction; I uncovered rocks and dug through dirt trying to find the answer. I always said, “What if the doctors would’ve seen it? What if they had diagnosed him earlier? Would that mean he wouldn’t be so behind in every single area? Would that mean something could have been done earlier? Would I have been able to save some of my child’s pain?”

Stage 4: Anger

Everything made me mad. Why did my son have to go through this? I would be in tears watching a typical child walk, talk or feed themselves. I would compare and contrast. I would play games in my head about how other families should have to go through this, too. I was mean to people I just met. My fuse was short, and words I would never say otherwise came out of my mouth. I got in fights with friends I loved dearly, and I became so isolated in anger, I felt like I was being suffocated in negativity.

Stage 5: Depression

Once the anger subsided, the depression came. It was a wave of complete and utter sadness. I cried so much during this time, and truthfully, this was not too long ago. I tried to imagine what life would look like for him. I’d find myself stuck in these thoughts about what happens when my son with disabilities isn’t a cute little toddler, but a grown-up. Will people be as accepting of him and his disabilities? Will the world be kind to him? I was sad thinking about an uncertain future. There were days getting out of bed was a chore. I often felt like I was living in someone else’s life.

Stage 6: Acceptance/Hope

This came at a strange time. In fact, it only happened a week ago, and this moment and breakthrough was the most powerful thing I’ve felt in a long time. It was a normal doctor’s appointment with a developmental pediatrician. We were going through a list and itemizing delays and areas where Von is struggling. I laid it out for him so he would understand what we were coping with and how we were working through it in therapy. Then suddenly the doctor said, “What does your child do well?”

In over two years of medical appointments and therapy appointments, that question had never been asked. I sat there almost dumbfounded and fumbling for words. I realized I didn’t know what he did well because no one ever asked me. No doctor ever asked or cared he was this tiny little human just trying to grow. In that moment, a lightbulb went off.

My son is a happy little boy. He loves to play with trains, roughhouse with Daddy, and he’s great at giving the most amazing hugs. He’s got the easiest and happiest disposition despite the needles, medications, therapies and hospital stays. He is an inspiration to everyone that meets him. In that moment, I found my acceptance and hope. I see him thriving. I see him doing things at his own pace, and he’s becoming the boy he was meant to be. He’s changing the community’s view of what disability means, and he’s doing it with a big smile on his face. If he can smile in the face of adversity, then I can, too. I have hope.

It was a long process, but I’m grateful to be on the other side of this experience. I know more grief might come and go, but I hope through my journey you can find your own hope and acceptance and know that there is nothing more powerful than hope.

Follow this family’s journey on Von’s Super Hero Page.

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. Check out our “Share Your Story” page for more about our submission guidelines.

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What You Can Learn By Watching This Video of People Making Out

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This year, International Kissing Day is more than a great excuse to get romantic with a special someone — it’s a chance to change attitudes about disability.

To celebrate International Kissing Day on July 6, Scope, a disability charity based in the U.K., released the moving video below to demonstrate that kissing someone with a disability isn’t any different from kissing someone who’s able-bodied. The film focuses on three couples — each made up of someone with a disability and someone without — passionately embracing and kissing.

The video is part of Scope’s larger End The Awkward campaign, which works to lessen the awkwardness around disability and dating by starting conversations about it.

“Only 7 percent of people have been on a date with, or asked out, a disabled person. That means a lot of people [are] missing out on date nights with some pretty great prospects,” the campaign’s website reads. “Our Kiss video shows that when you get down to it — literally — we’re all the same, and it’s about personal connection and chemistry.”

See the entire beautiful video below.

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The 3 Words Moms Needs to Hear If They Feel Like They’re Not Doing Enough

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Dear Mom,

I see you as your thoughts drift back to the unvacuumed home, the overflowing laundry basket and the unmowed lawn while the faint redness in your eyes and the slight puff beneath them reveal the lost sleep while tending to BiPAP machines, feeding tubes and a child who starts his day at 3 a.m.

But as sure as “ABC Kids” starts at 5 a.m., the dust will blow back in, the clothes will get messy again and the lawn will keep growing. Those chores aren’t a measure of your worth. No, that beautiful measure is in your arms, perhaps beside you in their chair, loving you and trusting you.

You’re doing enough.

Dear Mom,

I feel the tinge of guilt every time you drop your kids off at child care. For a moment, you feel relief knowing for the next few hours you aren’t a mother, therapist, neurosurgeon, psychiatrist, neurologist and pediatrician. You think to yourself: Perhaps I shouldn’t have gone back to work? Will my child be properly included? Does the staff understand the new sign he makes when he needs to go to the bathroom? I don’t think I did a thorough enough handover with them this morning.

You’re doing enough.

Dear Mom,

I see how you wholeheartedly celebrate every glorious milestone of all your friends’ children while deep down inside you try to contain your gnawing doubt about the therapy you have chosen or the amount of therapy you’re doing at home.

Today wasn’t a good day, I was grumpy and exhausted. Tomorrow we’ll do more kneeling at the couch, and I’ll model more words on his iPad. Perhaps tomorrow won’t be a day for therapy. Perhaps tomorrow is a day for cuddles or for playing on the swing. Your child can see your love and knows your strength.

You’re doing enough.

Dear Mom,

I hear you artfully question your therapists and doctors, hoping someone will tell you the magic number and combination of therapies that will ensure you’re doing everything possible to give your child the opportunity they deserve to reach their potential.

Are weekly and fortnightly sessions enough? Should it actually be twice a week? What if we joined a weekend group? I know you listen as they tell you you’re doing a wonderful job and you allow yourself to feel a moment’s pride until that little seed lodges itself back in your mind and you feel no one will give you a straight answer. How much is enough? How much is too much? And, terrifyingly, what if I’m doing too little?

You’re doing enough.

Dear Mom,

I see the pain as you watch friendships you care for go untended as your diary fills with appointments, clinics and therapy sessions. Do they know just how busy I really am? Will they forgive me for cancelling again? Will they still be there when I come out of this haze of learning to understand and accept? Will I ever come out of this haze?

I see you reading late into the night as you fill yourself with knowledge that will empower you and strengthen you. I see you as you build up a virtual network of people to walk with you on this journey and sit beside you when you’re down. Your friends understand. And yes, the haze does lift. You’re doing enough.

You love, you cry, you fight, you advocate, you encourage, you question, you listen, you learn, you nurture, you know.

You do enough.

Follow this journey on Give the Boy a Chance.

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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18 Truths People Who Use Feeding Tubes Wish Others Understood

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People who use feeding tubes, or who help a loved one use a feeding tube, are used to the stares. They’re not eating “normally” and sometimes, that makes others uncomfortable. It’s time for that to change. The Mighty asked its Facebook audience to describe one thing they wish others understood about their or a loved one’s experience with a feeding tube. The responses were enlightening. Here’s what they had to say:

1. “It’s not a scary thing.” — Leanne Dye-Taylor

It's not a scary thing.

2. “Running into the nearest gas station for a snack isn’t really an option. It takes planning and preparation to be gone all day, let alone overnight trips.” — Colby Okenka

A small child using a feeding tube.

3. “Everyone has one for different reasons.” — Kate Sytsma

4. “We don’t have feeding tubes by choice. It’s a life thrust upon us due to illness. We’re not just ‘picky eaters!’” —  Chanel White

We're not just picky eaters.

5. “A feeding tube isn’t the end of your life. For me, and for many, it is only the beginning.” — Savannah Orth

6. “Everything has to be scheduled around feeds, seven days a week.” — Lavella Garner

A woman with a feeding tube.

7. “It is not convenient.” — Elizabeth Small

8. “We can’t start giving him ‘real’ food just because he’s technically old enough to eat it… We can’t just pat him on the back if he chokes and aspirates; getting even a small amount of fluid in his lungs can be fatal. It’s not a matter of him being lazy, stubborn or stupid. For him, this is life and death, and I’d much rather people talk to me about it than just assume he has it because it’s ‘easier’ to feed him that way than to take the time to try to make him eat a bottle or jar of baby food.” — Jessica Hirschenhofer

9. “There’s nothing gross or disgusting [about it].” — Paula Lathrop Kockler

A boy with a feeding tube.

10. “No, even if we give him ice cream, he will not eat.” — Bailey Delaney-Woodard

11. “My feeding tube saved my life, and if it’s going to keep me as healthy as possible, I’m happy to have it.” Joan Elizabeth

My feeding tube saved my life.

12. “It’s OK to touch!* It’s not fragile, nor is it going to fall out when tugged.” — Bailey Annan Sonday

13. “I’d rather people ask questions than just stare.” Mandy Joan

I'd rather people just ask questions than just stare.

14.”‘Doing better’ doesn’t mean we can get rid of our feeding tubes. We’re doing better because of our feeding tubes. Getting rid of it could undo all of that.” — Catherine Richardson

Woman with a feeding tube.

15. “Just because I can’t eat, doesn’t mean I don’t want to go out and socialize with my friends. I’m happy sitting in a restaurant just enjoying the company.” — Mel Halliday

Just because I can't eat, doesn't mean I don't want to go out and socialize with my friends.

16. “Please don’t feel guilty that you eat. I eat too, just in a different way.” — Tamie L Dimmick Harlan

17. “No, it never just comes out. [It’s] just another ‘thing’ that you get used to. “– Jennifer Geister Ward

A little girl with a feeding tube.

18. “My feeding tube doesn’t mean I’m dying. In fact, it’s actually what has allowed me to keep living!” — Kristi Roach

My feeding tube doesn't mean I'm dying.

*Please never touch someone’s feeding tube without asking their permission.

**Some responses have been shortened and edited.

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