Why After Everything, My Child With Autism Is Still Perfect

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I imagined many things before you were born. In my mind, everything about you was perfect.

Although you never quite fit into the typical description I read in countless baby and toddler books, I saw this difference as uniqueness – you were perfect.

When the doctors diagnosed you with classic autism, I understood your differences and uniqueness would present certain challenges in your life. But in my eyes you were still perfect.

You were non-verbal for the first few years of your young life. It was so hard trying to soothe you when you cried because I didn’t know what was ailing you. Every time I looked into your eyes, my heart overflowed with emotion; you were still perfect.

You didn’t know how to interact with your playmates, preferring to be alone to play with your toys. While everyone interpreted your behavior as odd, I saw you as still perfect.

Your meltdowns came before your language. I knew this was your way of communicating feelings. This made it harder for us to go out and do things, but I knew these meltdowns wouldn’t last forever. Your language did come, ever so slowly, but it came. That’s all that matters; you were still perfect.

You get overly focused with certain objects or shows, which makes it more difficult to engage in other things. I gently try to redirect your attention, sometimes successfully, sometimes not. But every time I see the same thing; you are still perfect.

You still have certain challenges when it comes to communicating your needs, but it gets better every day. As you assert your independence, you become more aware of the need to verbalize your feelings. This is a huge step forward; you are still perfect.

You learn at a different pace than other children your age. You go to a school for kids with special needs where you learn life skills. You will not graduate with a high school diploma, but instead with more knowledge than when you started. Nobody can take that away from you; you are still perfect.

We were blessed to have had some great teachers that knew how to both engage and challenge you. It never ceased to amaze me, even with limited communication skills, how much you understood. You are still perfect.

As some kids are getting ready for college, learning how to drive a car or getting their first boyfriend/girlfriend, I know your path will be different. But it will be equally worthy and significant; you are still perfect.

You are very different than the child I imagined, and I’m glad. I’m grateful for all that you are. Reading and imagining are nothing compared to living and experiencing; you are still perfect.

You overcome many challenges on a daily basis. Each one you conquer makes you stronger, smarter and more independent; you are still perfect.

I will be your advocate when you cannot advocate for yourself. I will be your number one supporter in all that you do. In my eyes you are and always will be still perfect.

Follow this journey on Speaking Autism

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Why I Tell Special Needs Parents to Find Their ‘Green-Faced Moms’

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When Von was in the pediatric intensive care unit fighting for his life, there were people online raising money for us and praying for us. Our phones were lighting up, and we felt so supported and so loved in that moment. Von survived a scary week on life support, and we went home a few weeks later.

Then it got really, really quiet. People we spoke to all the time stopped calling. We stopped getting text messages from friends who we thought would always be there for us. Our lives became one of doctors appointments, medicine schedules, lab appointments, meetings with social workers and trips to the ER. We got invited to things but always had to cancel. Von’s immune system and lungs just couldn’t handle the exposure to germs.

We stayed at home for months at a time and only saw a small group of people, mostly family. Soon, the invitations to parties, events and even for drinks ceased. I’ll never forget the day I emailed a friend who I hadn’t seen in months, and she never responded. I was heartbroken.

It happened to my husband, too. He got lost in the medical world, and everyone abandoned him except one person. They say you find out who your real friends are when you go through difficult times. It was a punch to the gut to realize my true friends could be counted on less than one hand.

At a routine appointment for Von, his endocrine doctor said to me, “Katie, you need to find support. You need to find friends in the special needs community. You can’t do this alone.”

I was afraid of making friends with other moms with children with serious illnesses. When you see things in the medical world that can happen to children, it can stay with you. I was afraid of entering that world. However, I knew I had to go there because I was drowning on my own, and the sadness I felt was palpable to a doctor I barely knew. So I took a big step and started looking and researching ways to connect.

I found a mom on a Facebook page who told me about a group in my area solely for children with life-threatening and complex medical conditions. Her son also had the same disease as Von. It was a miracle she lived in the same state. She encouraged me to sign up for the organization.

I was terrified and put it off for months. I didn’t want to be that mom in that community. I just wanted to be like everyone else. Finally, after months of feeling horrible, I made the commitment and I filled out forms. Within two months, we got word we were accepted. Shortly after that, I attended my first event and I found friends. I found my people.

I found people I could talk to about medical lab reports, daily pokes, trips to the ER, extended hospital stays, loneliness, isolation and sadness. I could share our developmental milestones with them. They were there with us and had traveled the same path.

One of the moms called us the “Green-Faced Moms.” We’re mothers who don’t stand out in the crowd, but inside our lives are so different, we feel like our faces are painted green. We look like everyone else, but our children are fighting. We don’t relate to parenting the same way the masses do. We don’t worry about minor ear infections or sore throats. Our fight is to keep our children alive. Our fight is to make sure they don’t miss milestones and not to cry when they do miss them or never make them.

Our fight is with the education system to make sure our kids aren’t passed up and get the resources they need to learn. We advocate to the medical community for better drugs, better therapy and better treatment. We often sit at home alone while our child is too sick to do anything but sleep. We sit quietly at their hospital beds after another trip to the ER for a minor illness our child can’t shake at home. We are united in our journey and our path, and together we can get through this. My life changed when I found a group who got me.

I found hope after the first event. I continue to find hope every single day I speak to them and find ways to get through the day-to-day of managing my son’s needs. I can call them and cry and know they get it and have been there. If you’re out there and you see this, don’t do this alone. Get connected and find hope and friendship.

Don’t be afraid to enter the community of special needs parenting. I’m a proud member and I’m so glad to be here. I encourage you to find your “Green-Faced Moms.”

Katie Paulson the-mighty-07132015-1

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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To the Woman in the Library Who Scolded My Son With Autism

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I may have not been nice when I told you not to scold my kid. You might think he’s a spoiled brat and trying to hog the train table your kid wants to play on. Your kid might think that, too.

It’s not that I want my son to take away your son’s train. The sight of them playing side by side is so beautiful to me.

You see, the last time we came to the library, we had to leave very quickly when another kid tried to play on the train table with my son. My son has autism. Playing with others is a work in progress among many other social things he’s learning.

He didn’t want the others to play the last time we came because they’d mess up whatever game he was playing. He couldn’t tell them this, so he laid down on the floor kicking and screaming. We had to drag him out with his sisters, who were unhappy to be leaving the library early. 

This time, however, he played next to so many kids before your son came to play. They were playing so wonderfully until my kiddo grabbed the train from yours. And that is wrong. And he does need to learn it’s wrong. But I also want to reinforce the good. He didn’t lie down and become inconsolable because another child sat next to him. He didn’t do anything that caused us to leave the library. He, as a lot of 6-year-olds do, took a toy away from another kid.

We have come so far from where he was. We can do so many more things that most parents take for granted. And yet, all you see is my kid taking the train.

I do apologize for him taking the train. And one day I know he will apologize to your kid as well. Because progress with this kid has been amazing, and he never gives up trying to make friends.

But next time, let me scold my kid.

Amanda Crews the-mighty-07132015-003

Follow this journey on The Pieces We Were Given.

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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Virgin Media Removes Harmful Ad After Epilepsy Advocates Speak Out

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Last week, Twitter removed hazardous ads after a charity in the U.K. pointed out how they could trigger seizures. On Monday, Virgin Media faced the same accusation after the company posted a flashing video on Twitter for its #AllTheFootball campaign.

Intense strobe lights, certain visual patterns and continuing rapid flashes of different colors are just a few examples of what can trigger a seizure for people with photosensitive epilepsy, according to The Epilepsy Foundation. People on Twitter were quick to alert Virgin Media to this, urging the company to take the ad down.

Epilepsy Action, the same charity that called out Twitter’s ads, actually tested the Virgin Media ad online to confirm it could cause harm to people with photosensitive epilepsy.

Soon after, Virgin Media responded to Epilepsy Action and removed the ad.

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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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