What I Tell Myself When I Worry About My Child With Special Needs’ Future

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Ivan is 10 years old. He’s not a baby anymore, but he’s also not a big kid yet. I mean, he’s big — the biggest he’s ever been! — but I can still pick him up when I need to.

My husband says, “These are the salad days.”

Yes, that’s a real phrase. I had to look it up! It means these are our best days. This is when everything is at its peak, and we are at our happiest.

But if you’re a glass-half-empty person, another way of looking at this may be that it’s all downhill from here.

Ivan has significant disabilities. He’s blind, nonverbal and in a wheelchair. Does that define Ivan? Of course not! But those are important factors in our everyday lives.

When Ivan was a baby, we also had all the challenges that come along with having a baby: breast feeding vs. bottle feeding, not sleeping through the night, etc.

Then there are also all the good parts of having a child who has a disability and is still little: You can pick them up easily, diaper changes aren’t that difficult and they’re certainly not socially frowned upon. They’re still cute and everyone wants to hold them!

But what happens as your baby gets bigger?

At 10 years old, we’re still in that sweet spot between baby days and big kid days. He’s sleeps through the night, enjoys eating just about any meal you place in front of him and (cue the trumpets) he’s mostly toilet-trained! I can still pick him up when I need to so transfers aren’t breaking my back, and he’s still super cute (even if I am biased).

Let’s also throw in that my husband and I are still relatively young and healthy, so caring for Ivan isn’t physically taxing.

I think these really are our salad days!

I’ve been thinking about this a lot lately. If these are the best days we have, then I should cherish them. But it also worries me endlessly about what happens next. What does the future hold for our family, especially for Ivan?

So this is what I tell myself (and maybe this can help you, too):

People are amazing at coping and adjusting. Think about all the things that have happened in your life that seemed like absolute tragic game-changers at the time. Did you give up? Did you stop living? No! You dealt with the change, picked up the pieces and moved on.

Remember when you first learned your child had a disability? It might’ve been painful at the time, but you adjusted to the news, learned to live a new life and moved on. You just did it because that’s what people do.

And now life is so good, you’re actually referring to it as the best it could possibly be! Ten years ago you never could have imagined cherishing your life the way you do now. But you do. And you know what? You will feel the same way in another 10 years. Ivan will be (gulp) 20, but when he’s 20, you’ll be loving everything about him. Sure, there will be new challenges, but you’ll find solutions and you’ll deal with them.

Remember this: People who ask if the glass is half empty or half full miss the point. The glass is refillable.

Amber Bobnar the-mighty-07132015-002

Follow this journey on Wonder Baby.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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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5 Things People Get Wrong About Anxiety

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I was heading out to my 22nd birthday dinner when it hit me like a ton of bricks an anxiety attack. I’m 1 of 6.8 million adults, or 3.1 percent of the U.S. population, who suffers from Generalized Anxiety Disorder (GAD), which is characterized by excessive or disproportionate worry. Although it’s not something I experience often, anxiety attacks, also known as panic attacks, are still prevalent. My heart started pounding, my legs got weak and I began to feel like I was outside of my body. It’s like my body was going through the motions while my mind was going blank.

In the beginning I was in denial, but quickly came to sorts with what was going on. I sat down for a few minutes and took several breaks on my walk to dinner. What should have been a four-minute walk became almost 20. As my mind began sorting itself out and I was aware of my surroundings once again, my stomach starting doing somersaults. This was not going to be a quick attack; this one would be long and tough. As if blacking out completely sober wasn’t enough, then came the vomiting.

I couldn’t even count how many times I had to get up from the dinner table. Between running to the bathroom and outside to the curb (and even to a parking garage), this anxiety attack left my stomach empty. 

On a trip to the parking garage next to the restaurant, with my cousin squatting next to me as I nearly gagged next to a Mercedes Benz, a man walking by asked, “Are you guys OK?” At that point, I couldn’t help but giggle. “Nothing happening here, just some anxiety.”

If you’ve never experienced anxiety, it can be hard to understand why it might make me rush to the bathroom in the middle of dinner or gag next to a car. Here are five things people get wrong about anxiety:

1. Anxiety is all in a person’s head.

True, anxiety does stem from one’s mind, but it’s not always avoidable and can bring a lot of physical distress. Exhibit A: It gets to the point of tossing your cookies.

2. Having anxiety isn’t a big deal.

Take it from a pro, there are times when it is debilitating. There are good days and bad days, but nonetheless, anxiety is not something that happens unconsciously. We always know it’s there.

3. Anxious people are incapable of having intimate relationships.

False. Despite how stigma labels us, we’re not crazy. In fact, I think we make life exciting for the people we’re with. I cherish my relationships, and I’m actually really good at understanding other people’s emotions because I’ve experienced anxiety. 

4. There’s nothing you can say or do to make a person with anxiety feel better.

Of course there are! While there are things you should not say or do to a person with anxiety, there are definitely things you can do to help. Let them talk and respond in a normal manner. Sometimes all we need is a shoulder to cry on or someone to hold us in our worst moments. Talking to us in an exaggerated way will only make things worse.

5. People with anxiety are lazy and weak.

We might seem lazy when we get so anxious we fall into a state of depression, but it doesn’t mean we are lazy. Anxiety can be exhausting at times, forcing one to stay motionless in bed. But weakness is not in our vocabulary. Living with anxiety makes us work hard every day to get stronger and stronger to combat the devil on our back.

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Can You Tell Which One of My Kids Has Special Needs?

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It was dark at my parent’s rural home. My children were watching the sky and waiting for fireworks. While they watched in anticipation, I watched them. Each child responded in a different way. One stood at the edge of the cornfield and waited. Another was snuggled quietly next to my mom. The other yelled out in excitement while the last sat close to daddy.

It was hard for all my children to wait. While we waited for the sun to fade, two of my children were brave enough to play with sparklers. One was more enthusiastic than the other, but both were amazed by what they held in their hands. When the sun finally faded, all the children got chilly. My mom brought out blankets and jackets. All but one could sit still long enough to get warm. 

Two of our four children are early birds  — one of them was sitting on my lap. All was quiet until another round of fireworks. The little early bird on my lap darted and would surely be asking for more fireworks the rest of the weekend. 

To an onlooker, we would have been the picture perfect family. I could’ve snapped a photo and posted it on social media, proudly boasting. Those who don’t know our family well enough just might’ve believed it. But pictures can be deceiving. One my four children has an incurable disease called Tuberous Sclerosis Complex. He is severely effected by this disease and because of it, also has epilepsy, autism and intermittent explosive disorder. Could you tell which of my four children this is by my story? If you were an onlooker, I bet you couldn’t have.

Differences are a matter of perspective. We can look perfect from the outside or in a photopraph, while hiding our differences on the inside. Or, beauty can be overlooked because of superficial differences on the outside. Exclusion based on either denies one the opportunity to realize beauty isn’t defined by conformity.

wpid-picsart_1436036483795 Consider a scene at a grocery store: A mother is there with four children. One of them becomes emotionally distressed. That mom could be me. Do you give a disapproving glance or do you give her grace? How do you know if it’s my child with autism, struggling with neurological issues, or one of my other three, simply over-tired? You don’t know and I won’t tell you.

Like those fireworks that filled up the sky, each one of us is unique and made of different colors, shapes and designs. We enjoyed both the ones that silently appeared before us, and those that made a “boom” on their arrival. How mundane would life be without these differences? We know nothing about the inner-workings of fireworks, but we’re smart enough to see them for what they are — just as we should see everyone, beautiful and bright. We’re all meant to fill up the darkness of life with different colors. Think of that next time you lift your face to the dark sky. 

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To the Mom Who Feels Like She’s ‘Too Tired’ to Be a Good Mom

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Dear Google Searcher:

Today you landed on this page because you searched “too tired to be a good mother.” If you’re searching terms like this in what little spare time you have, it tells me one thing: you’re probably exhausted.

I’ve been there. Oh, I’ve been there.

I know what it’s like to lie down in bed and have the infant child wake up as soon as you have a split second to breathe. I know at that moment you would rather do anything than get back up out of that bed for the third time that night. I know the feelings of anger and frustration, and sheer desperation, when you think that you just can’t nurse or rock that child one more time without losing sanity completely. But in those moments, I got up out of bed and rocked and nursed my baby back to sleep — again — while praying for grace and strength, and hoping he’d stay asleep this time. Because I’m a good mother, and so are you.

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I know what it’s like to drag yourself out of bed at 5:30 am (for the 40th morning in a row) to attend to your 2-year-old who is crying for you. I know how it feels to stumble into the living room, fumble with the TV (cringing with guilt because you already know how much TV this child will be watching today), unwrap a banana, and hide under a blanket while trying to muffle the sounds of “Thomas the Tank Engine” so you can get maybe a few more minutes of sleep. I know how hard it is to put a smile on your face when you greet that perky face before the sun wakes up. But I did. Because I’m a good mother, and so are you.

I know what it’s like to mother while having a condition that makes you chronically tired (chronic fatigue syndrome). To mother when your husband is gone for a year, and you’re left at home with the infant who refuses to sleep through the night that entire year. I know what it’s like to think to yourself, day in and day out,“If I could only get a little more sleep, then I would be a better mother. Then I wouldn’t yell at my child. Then he wouldn’t have to eat SpaghettiOs because I’m too tired to cook. Then he wouldn’t have to watch so much TV…”

I’ve been there so. many. times.

(And even though he’s 2 and a half, I still am many days.)

I can’t promise you’ll never feel tired again. But the tired changes. It goes in phases. There’s the infant-is-up-every-hour-to-nurse tired… the infant-is-sick-and-teething-and-screaming-all-night-long tired… the chasing-after-the-toddler-all-day-long-tired… the dealing-with-terrible-two-tantrums-all-day-long tired. Each one is hard in its own right. And each one is different to deal with. But each is a phase.

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I promise your baby will sleep through the night… eventually. It might take two or three years. (Trust me, I know.) And it might take several years after that point, but eventually, you’ll look back, see how far you’ve come and think, “Naw, this isn’t so bad now.”

This isn’t one of those “Oh kids grow up so fast, so treasure every moment while you can!” posts. No. This is the post that says, “Hang in there, Momma. You’re doing great. You’re a good mom, even when you’re too tired to see it.”

I know you feel guilty about the hours of TV, the extra naps, the junk food dinners, the extra lattes. I know you feel guilty about being too tired for sex, snapping at your husband and yelling at your kids. I know you wish you had more energy to do things like taking showers and wearing makeup or going to the gym.

But “good” motherhood isn’t measured in the hours that your children don’t watch TV and how much money you spend on organic food. It’s not measured in how many showers you take or how many times a week you make it to the gym.

“Good” motherhood is immeasurable. I said it before, I’ll say it again:

“Good” mothers are the ones who worry about being good mothers.

“Good” mothers know that hugs and kisses and bedtime stories (even when you’re yawning the whole time you’re reading them) are more important than the external things like too much TV with breakfast and SpaghettiOs for dinner. “Good” mothers may yell and snap, but they always say “I’m sorry” and give a hug afterwards.

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So take heart, tired momma. You will make it through these exhausting days. And you will be stronger for them. You are a good mother. You only need to look into the eyes of your children and believe it.

Follow this journey on Beautiful In His Time.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 Artist Behind the Painting J.K. Rowling Just Called Out on Twitter

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Henry Fraser is an artist and inspirational speaker living in the U.K. When he was 17 years old, he went on a vacation with some friends in Portugal and took an ill-fated dive into the sea, damaging his spinal cord, according to his website. The injury rendered him unable to move his arms or legs.

My new life began that day,” he wrote on his website.

Determined to do something good with his situation, Fraser, now 24, shares his experience of becoming a quadriplegic with others in what he calls his “Pushing Myself” talk. Another of his talents? Painting — with his mouth. By attaching a paintbrush to a longer tool, which he controls with his mouth, Fraser creates impressively detailed pieces he calls “mouth paintings.” Many of his works feature athletes or people in action scenes.

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Photo from Henry Fraser’s Instagram
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Fraser’s first mouth drawing from his Instagram

His latest mouth painting was good enough to catch some pretty notable attention. On July 7, Fraser tweeted a photo of his painting of Harry Potter.

A few days later, J.K. Rowling herself tweeted her approval.

To keep up with Fraser and view more of his artwork, visit his Facebook, Twitter and Instagram pages.

h/t BuzzFeed

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How a Black Cat Helped Coax Me From the Isolation of Depression

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I sat on my patio day after day, feeling depressed, scared, lonely, isolated, empty and hopeless. I couldn’t remember how many days it had been since I went anywhere or wanted to talk to anyone. I didn’t even have music playing. I used to love music. Things change.

I had no motivation or energy to do anything, and no joy. Nothing mattered. My friends and family were ready for my major depressive disorder, grief, severe anxiety, PTSD and fear to be gone. After all, it had been over a year since the last death of my loved one. I wished it were that easy. During rare times when I was around friends and family, I still felt alone. They wanted the person I used to be. Trouble is, I didn’t know if she would be back.

One day, I made coffee and went to the patio. There was a black cat near my back door. We scared each other. After getting over the initial shock, he approached me and rubbed around my ankles and feet. I used to love cats. Things change. It was an effort to talk to, look at or pet this beautiful creature. So I didn’t. He hung around anyway, rubbing on me occasionally. He greeted me every morning for four days. He was patient and persistent.

On day five, he wasn’t there to greet me. I discovered I actually missed him. Three days passed. No cat. I’d gotten used to him hanging around. Then one morning he was back, so I gave him a snack and talked to him. He started meowing in response. I petted him, and it felt good. We both liked it. A pattern was established. He would show up and stay for a day or two until he went back to wherever he lived. I found myself looking forward to his company.  We eventually started playing during his visits. He made me smile and giggle. He even warned me of a sizable snake in the backyard. It was good to finally have a few moments of feeling that everything would be OK, a few moments of light.

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The cat turned out to be my next door neighbor’s. After he’d been visiting me for two to three days a week for weeks, one stormy night, my neighbor sent me a text asking if I’d seen her black cat, Boogie. We’d exchanged numbers shortly after they moved in, as I do with next-door neighbors in the event of a house emergency and one of us isn’t home. I told her he was safe and sound on my patio and that I’d wondered where he lived when he wasn’t here. He was too clean and well-cared-for to be a “street cat” and certainly wasn’t feral.

Not only did the cat bring me some rays of light in my deepest, darkest times, he also facilitated human contact in my life. My neighbor and I forged a friendly, neighborly relationship after learning we shared her cat. I’d been isolating for over a year from friends, family, loved ones and life in general.

One day last year, Boogie disappeared. She and I were both worried about him, but he never came back. We were both sad, but it brought us closer together, and the cat also led to an unexpected friendship in which we were able to help one another through some challenging times. As it turns out, we’d both been withdrawn, depressed and isolated. Now, our grandkids even play together occasionally. We both still miss “our Boogie.”

Boogie’s surprise visits showed me things do change. There is hope, after all.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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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