4 Ways to Encourage a Special Needs Family

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“What can someone do to encourage you?”

This question came as a surprise.

The man who asked stopped by our table at Sweet Tomatoes. He saw my son, Samuel, had a tracheostomy, and with a smile and a kind heart, he approached us.

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At first, I didn’t know how to answer. My husband, Ralph, and I looked at each other, pausing for a moment. Ralph spoke up first saying we usually encourage others rather than the other way around. The man nodded and then asked us many other quality questions. However, his first query stuck with me. Given another chance to answer differently, what would I say?

1. Talk about our children.

Like most parents, talking about my son brings me joy. So chat away. Chances are you’ll get a full update on our little man’s shenanigans. I have to remember to catch myself so I don’t talk too much. Am I the only one?

You can ask a special needs parent how their child is doing in school or what fun thing they have learned to do. A topic that’s sure to start a conversation.

2. Offer a simple act of kindness.

A dear lady from our church who loves children occasionally comes by spending a half an hour reading a book to Samuel. What kid doesn’t love attention? While he receives personal one-on-one time, I’m freed up to do a household chore or two. This act of kindness is a blessing.

Maybe your gift isn’t entertaining children, but you can do a household chore. Offer to go to the grocery store or drop by with home-cooked meal. It’s often hard for special needs parents to get out. Something as simple as mowing the lawn can be a big help, too. Try any one of these hands-on practical tips or pick one of your own.

3. Offer words of encouragement.

Affirming words are my love language. I read every Facebook comment, Twitter message and blog comment for encouragement. When Samuel was in the hospital, in the days before Facebook (imagine that), I would read comments on Samuel’s CaringBridge website. During many difficult days, the comments posted helped to lift me up right when I needed it. So, comment away.

You can also send an encouraging card letting them know you are thinking about them. Who doesn’t like to get “fun mail.” (“Fun mail” is personal mail not related to advertisements or bills.)

4. Offer your prayers or good thoughts.

Whether Samuel is feeling great or has a runny nose (allergies), I am thankful for family and friends who are praying for our sweet boy. Just today, a friend texted me asking for an update on how my son’s allergies are doing. These prayer partners are so sweet and patient to put up with so many prayer requests over the years. What a blessing to have this resource at my fingertips.

Ask a special needs parent, “How can I pray for you?” You may be surprised at the answer you receive. Ask if you can share the prayer request on a church prayer chain or on social media. For our family, being healthy is a daily prayer request.

The kind gentleman’s interest in our lives was truly touching. His example inspires me to ask others, “How can I encourage you?” Then I’ll tuck their answers away in my memory database (or iPhone). I may not be able to do them all, but I can pick one and hope to make a difference.

Follow this journey on A Miracle in My Living Room.

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 [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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When Your Child Can’t Tell You Where It Hurts

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My son, Braxton, fell yesterday. I didn’t see how it happened. It’s not the first time he’s fallen, and I didn’t see it. But this time it was different. Only I didn’t know it.

Today, I got a call from the school nurse.

Nurse: “Have you seen Braxton’s foot?”

Me: Panic sets in. “His foot? Um, no? Why?”

Nurse: “He hasn’t been wanting to walk today.”

Me: “Oh yeah, I told his teacher that. He’s had a sinus infection, and we think his balance is off. He’s been a bit wobblier than usual.”

Nurse: “No, I think something is wrong. His foot is swollen. He won’t bear weight, and he cries when we try to move it.”

Mommy guilt immediately sets in. How did I not notice? He had therapy this morning, but none of us noticed. How in the world did this happen?

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Oh, right, Braxton fell yesterday. I didn’t see how it happened. He fell, and I heard a thud followed by a cry. I jumped up from the couch to check on him. He was sprawled on the floor with his head against the wall. I thought he hit his head. I checked for bumps and bruises. I checked his eyes. No vomiting or loss of consciousness. We’re good.

But I didn’t check his foot. I didn’t even think to check. He had no words to tell me to do so.

This morning he had therapy. He didn’t want to climb the stairs. In fact, he stiffened his leg and planted his feet. We thought he was just being stubborn as he often does.

In hindsight, I remember thinking he has sure been crawling around more than usual. I remember realizing his balance was off more than usual. I remember seeing him drag his foot as he walked.

I saw it but didn’t piece it together. I should have noticed. What kind of mother doesn’t notice? The kind of mother with a child who cannot express hurt and pain.

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I believe this is the hardest part of having a nonverbal child. The part where your child’s pain tolerance is so high he doesn’t flinch when the doctor tries to see where it hurts. The part where they end up taking 10 X-rays to check out the whole leg because he can’t tell us what part hurts.

The part where I feel helpless. The part where I feel like I failed my child. The part where the doctor says, “Well, we didn’t find anything. Just keep him off of the foot.” The part where I can see there is something more, but he can’t tell me and the doctors.

Of all the things I wish for my child, the one I wish for something fierce is a voice. Words to tell me when he hurts. Words to tell me when something is wrong. He’s not proficient with his talker yet, so that can only help so much. Days like today are frustrating.

I wish I could say I’m glad it wasn’t worse, but what if it is and we missed it? Braxton is clearly in pain when he tries to walk. His foot turns outward, and he kind of drags it behind him.

But the doctor says nothing is wrong. All they saw on the X-ray is a hip issue we knew about where the hip joint didn’t fully form. Is that why he is limping now? Did the fall somehow exacerbate that? I don’t know. The doc thinks so but can’t say for sure.

I wish Braxton could tell me. I wish I could make it better like a mom is supposed to. This is the only part of my son’s condition I regularly wish away.

Follow this journey on Journey Full of Life.

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 [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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If You’re Scared to Ruin Everyone’s Fun Because of Your Illness

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For the longest time, I didn’t take care of myself. It took me a while to realize it was because I wasn’t my own priority.

So I learned to listen to my body, respect its limits and respond to its needs. I started taking breaks, saying no to excess obligations and teaching myself to be OK with that.

When I was diagnosed with endometriosis in 2014, this became an even bigger priority for me as I struggled to manage painful symptoms and fatigue. But a recent situation made me realize something about my attitude toward my health. I’ve made it all about me. In a way, I’ve been selfish, distrustful and isolated.

A few months ago, my husband, Andrew, and I joined two of our good friends for a wedding. I was pretty worn out from work travel already, but I stuffed my clothes into a suitcase, dropped our dog off at our friends’ house and got back into the car.

I knew we’d be having a busy weekend with his friends, going out to eat and staying up way too late. I tend to use up a lot of my limited energy in what I refer to as “marathon social situations” to begin with, but when Andrew’s friends are involved, this seems to reach a whole ‘nother level.

After staying up late the night before, I was exhausted the day of the wedding. Between my poor sleeping habits, travel eating and shivering at the outdoor ceremony, my painful endometriosis symptoms were in full force. And I was in charge of driving back to our friend’s apartment.

But of course, there was an after-party following the wedding. Our friends were ready for more fun times, but I was clutching my side, mentally checking over my body and wondering if I could manage the 45-minute drive on top of a party.

Andrew looked at me and said, “Do you feel well enough to go?” I really, really didn’t. But I also hate being the fun-ruiner.

So after hemming and hawing and hoping that Andrew would shut down the fun for me, I finally agreed to the after party.

It was a bad idea. While the previous agreement was to hang out “only for a little bit,” no one wanted the festivities to end. And because I hurt too much to stand in a circle and follow everyone around the house, I sat in a chair for most of the night, making me look 1) super not fun, 2) like I was pouting and 3) did I mention super not fun?

I luckily managed the drive back, but I was obviously not happy. I didn’t say a word the whole ride, and I immediately went to sleep when we got to our friend’s apartment.

Heading back to our house the next day, Andrew and I talked over what I dubbed the “miscommunication” and what Andrew saw as a “complete lack of communication.” He would have immediately told his friends we had to head back had I made it clear that’s what I needed. But I didn’t, so he figured I was fine to hang out longer.

“How could he not see it?” I thought. “I was clutching my side, practically limping, giving him the ‘read my mind and know that I feel sick’ eyes and… oh… uhh maybe I should use words.”

Why was I so scared to let my friends and my husband know that I felt sick? Yes, I hate being the fun-ruiner. And I hate being a burden on people when my health wears down.

But whatever gave me the reason to believe I’m a burden?

It reminded me of this time I got sick when I was a kid. I threw up in the middle of the night, but I didn’t want to wake up my parents and tell them. I remember my mom sadly looking at me and saying, “Don’t you love me?”

Love is asking for help. Love is telling people what you need. Love is letting people love you.

As a kid, I didn’t let my parents love me when I got sick. At that wedding, I didn’t let my husband and my friends love me when I needed to go home. I was selfish. I kept it inside and let myself bear my own burden.

If your friends and family love you (which they do), they want to prioritize your physical needs. They want to be there for you. They want to love you by caring for you.

So if you’re in a situation like mine, and you don’t want to ruin plans — whether because of an illness or for a completely different reason — please remember this. Please love yourself and let others love you, too.

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Follow this journey on Still Sunflowers.

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 [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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When My Child With Special Needs Met Santa for the First Time

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We weren’t quite sure we were going to have a “normal” Christmas this year.

In fact, much of it won’t be normal. We won’t be able to travel like we did in the past because the humidifier that keeps the air moist and warm for my son Isaiah’s CPAP isn’t portable. He can be off of it for a few hours, but longer periods of time could dry out his nose, and it’d likely get really sore.

I want Isaiah to have as normal a life as possible. Every year when I go Christmas shopping, I slow down as I see the smiling kids telling Santa what they’d like this year.  I always thought to myself, “I can’t wait to do that with our future kiddos.”

So in order to grab just a little bit of normal and hopefully start a Christmas tradition for our family, I contacted our local mall through Facebook. I told them about Isaiah and asked them for help.

I asked them to allow us to come in before the mall opens so we could take pictures with Santa without putting Isaiah in harm’s way by standing in line with other families. You see, doing that puts Isaiah at risk of the common cold, the flu or whatever a child who stands next to us could have. And because of Isaiah’s respiratory situation, something like that could develop into something dangerous for our little fighter.

The marketing manager, Jillian, answered me within 24 hours and got me in touch with Muriel, the Santa set manager.

And with Jillian already giving the mall’s blessing (their doors are already open for mall walkers), Muriel asked Santa… and he said yes!

So this morning we got Isaiah ready. He got a good bath, but not before checking himself out in his mirror I rigged up…

He took a bath where he smiled and laughed his way through it… and then promptly fell asleep in his Christmas outfit.

Once it was time to go, we got in the car and made our way to the mall. It was our first trip out as a family where Isaiah wasn’t going to a hospital or doctor’s office. Before we knew it, it was time to head to Santa’s set.

We met Santa and Muriel. Santa was wonderful, and Muriel was fantastic. They made sure Santa’s set was clean for Isaiah. Santa’s suit was freshly laundered. (Nice job, Mrs. Claus!) Even though there was already a line started at the Welcome area, they brought us past that and into the exit.

Ready for it? Ready for Isaiah first picture meeting the Big Guy?

We will never forget this. This Christmas where we’ve started our tradition to take Isaiah’s picture with Santa.

Until next year, Santa…

Thank you to the mall. Thank you, Muriel. Thank you, Santa Claus.

Follow this journey on Oh I Believe in Isaiah.

The Mighty is asking the following: Share one unforgettable holiday moment related to your experience with disability, disease or mental illness. 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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The One Statement I Want to Hear From Loved Ones About My Invisible Illness

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RSD, which stands for reflex sympathetic dystrophy, is something I’ve lived with each day for more than 10 years. It’s a chronic pain condition. Basically, my nerves constantly (that means all the time) signal to my brain that I’m experiencing pain in both of my legs, from my toes to my thighs. The cycle never stops. That means I live in pain all day, every day. When I tell people this, I usually get the following questions/reactions:

“So how can you do all those things?”

“Wow, that’s so impressive you’ve accomplished so much even with this condition”

“Does it really hurt all the time?”

“Is it a psychological thing?” or “Is it all in your head?”

“It must not be that bad.”

“Can’t you just take medication?”

“You don’t look/act/seem sick.”

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These statements are so incredibly frustrating to hear. My illness doesn’t define me, but it is a huge and real aspect of my life. Instead, I’d rather hear “I believe you.” Living with an invisible illness means that if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Why is that? Why do I need to prove myself to anyone else?

Chronic, invisible and physical illnesses can be challenging to confront each day. And when you identify with so many other things in addition to your chronic illness, those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real.

For so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal.” We have to because we can’t allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. But what’s challenging is that even when we give off the appearance of being “fine,” we’re struggling. 

The truth is, if I were to be honest about how much pain I felt each day, it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine.

Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day, and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition.”

When people find out you have a chronic illness, their disposition towards you changes. Your accomplishments are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate or feel uncomfortable, so we attribute praise. But I’m just me. I’m one ordinary person with this specific challenge. It’s a constant part of my life, but it’s not the only part of my life. 

I’m a “spoonie.” In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burnout is real. Running out of spoons is why I often “quit” at 9:30 p.m. these days. But that’s my reality. And all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh, validation feels so good! Validation sounds like “I believe you.” It sounds like “What do you need from me?” It feels like genuine understanding.

Follow this journey on I’m Probably Overthinking This.

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 [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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Macy’s Clerks Make Woman’s Birthday Extra Special With ‘Small’ Gesture

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A young woman’s 29th birthday became all the more special on Thursday thanks to a few sales associates at a Macy’s in Lake Grove, New York.

Lori Burke took her son and daughter, MaryEllen, both of whom have an extremely rare genetic disorder called Warburg Micro syndrome, shopping for MaryEllen’s birthday. An employee named Thea immediately approached the trio after noticing a birthday balloon attached to MaryEllen’s wheelchair. She then escorted them to the Lancome makeup section, where several other sales associates began grabbing merchandise as birthday gifts.

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Image courtesy of Lori Burke

Lori Burke told The Mighty that birthdays have always been a momentous occasion for the family. When her children were infants, she was told to not expect them to live past the age of 2. Now every birthday gets celebrated “in a big way.” Having others join in on the celebration only made the experience even sweeter.

Burke explained why the small moment was actually not-so-small on Facebook:

You see, whenever we are out in public, people normally don’t come towards us, they usually shy away. They usually give us a quick look and look away. We have been shopping many, many times in MaryEllen’s 29 years and no one has ever approached us with such excitement and joy! Thank you to your amazing employees for making this birthday one to never forget. It was a day that MaryEllen was noticed for just being a birthday girl, not a girl in a wheelchair that should be avoided. So, Thea and all the Lancome area girls at Lake Grove Macy’s, keep doing what you do because your joy is contagious! And thank you for making MaryEllen feel so special on her birthday.

“I can’t say enough about the lovely Macy’s associates,” Burke added in an email to The Mighty. “To go above and beyond and approach us, mere strangers, was something I will never forget. It was a small gesture for them, but so much more to us.”

Be sure to visit Burke’s blog, The Heartful Mom, for more stories about her family.

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