Why It's Important Kids Know About Differences and Disability

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There are some children who grow up around people with disabilities and know from a young age that not everyone acts or communicates the same way they do. There are also some children who may never be around someone with disabilities until they go to school or meet someone out and about in public.

I recently heard one of my daughter’s friends say to her, “Don’t drink after your brother, his autism might rub off on you.” As much as this comment made me angry at the moment, it also made me sad. I explained to her that wasn’t possible, and she said she understood. I also explained that if it was meant to be a joke, it really isn’t funny. I will never really know if she meant it as a joke or if she was serious, but I can tell from day-to-day life, many kids could use some lessons in diversity.

As a parent, I feel teaching your children that not everyone acts or communicates in the same way they do, is just as important as anything else you can teach them. Please take the time to talk to your child and explain that not everyone they meet will be just like them. Let them know if they have questions about why someone does something, or why they don’t talk, it’s OK to ask about it. I can’t speak for everyone else, but I am more than happy to answer questions children ask me about why my son does something or why he doesn’t talk. I believe there are other moms of kids with disabilities who feel the same.

I see lots of little faces looking confused when they meet my son. I hope that later, if they ask their parents about it, their parents take the time to explain that not everyone is the same. I hope they take the time to teach their kids not to be confused, afraid or even worse, mock those with differences.

Let’s be a world that teaches our children about love and acceptance. I believe we can start by teaching kids about differences.

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Thinkstock photo by JBryson

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How My Friend Frank Helped Me as an Adult on the Autism Spectrum

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When I started my job at a big-name pharmacy I was starting over and excited for a new adventure. I didn’t realize I would be meeting a friend that would change my life, a friend called Frank.

When I started my job I was a little hesitant to tell others about having autism, but when I told Frank he simply said, “You have autism, you are not autism.” He really has gone on to teach me I should embrace and be happy with who I am.

Frank, no matter how busy he was, always took the time to show me what I needed to learn to be successful, and when I got overstimulated or feeling overwhelmed, he either taught me breathing exercises or he would remind me I was doing a good job and not to be hard on myself.

What makes Frank such a great friend is he actually took the time to get to know me, and he knew what to expect with me as an adult with autism. He looked past it and treated me just like everyone else. If anything, he believed in me and he never gave up on me.

One of my greatest achievements is getting Champion of Champions for my place of employment, and I believe I got this award because of my hardworking attitude and being a role model to the autism Community — and because my friend Frank who never gave up on me.

I have my everyday heroes and my friend Frank is one of them. He taught me to celebrate and embrace who I am and today I celebrate and embrace my autism and I help others as well. I decided to start my project by writing to those on the spectrum and their families. I wanted to do for others what Frank did for me. Frank has taught me so much and he is truly one of my greatest role models. But most of all, he is one of my friends for life.

He once told me, “You always make me proud.” Well Frank, my sweet friend, you’re the one who makes me proud.

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Thinkstock photo by: Wavebreakmedia

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It's Not the Day for a School Play for My Son on the Autism Spectrum

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My son, Sonny, wasn’t going to participate in his school play.

Sonny has previously surprised us by performing in the “Nativity” at Christmas, although he only stayed for the first half. When they announced they would be putting together a play to show everyone what they have been learning at school, I was excited. Sonny was to wear a pair of blue trousers and a blue t-shirt to become a blue alien in the play.

All was well and good leading to the play. I didn’t hear too much about the progress of the play, but I had the date in my calendar and was really looking forward to sit among the other parents and watch my little boy on the stage.

We got up at 6 am and were ready and breakfasted on time, but Sonny wasn’t happy. It was a challenging morning. Despite it all, we made it to school on time and with smiles, which was an achievement in itself. I told Sonny’s one-on-one he had a tough morning and in all honesty, I suspected he would not be able to cope with the school play. He was tired, so I recommended for him to do something calm and quiet with her rather than the play. In hindsight, the play was probably what was causing Sonny angst. The aide completely understood and we both agreed he needed to get through the school day. I learned he hadn’t really wanted to take part in any of the rehearsals and found getting up on the stage terrifying.

I’m not good at many things, but there are a few things I believe I am great at. Being a mother is one of them. I am so hard on myself; I am my own worst critic, but I know deep down what Sonny needs. With that in my mind, I continue to make decisions that are in Sonny’s best interests. If I’m right, then great, and if I’m wrong, then we make it as a lesson learned and try again.

Before Christmas, I beat myself up for not allowing Sonny to go the school pantomime, as I knew it would’ve be too much. This time, the decision to keep him from performing in the play was the right decision to make. There is no point in encouraging him to do something he doesn’t feel comfortable with. It will only make things worse and that’s not what anybody wants.

A year ago, I was seriously concerned that Sonny wouldn’t be able to thrive in a mainstream school, but he is. It’s incredible what progress a child can make when all the right supports are put into place. I can’t thank Sonny’s school enough for making it possible for him to access a good education in an environment in he adores and where he feels at home. I love to see him grow in all areas of learning. Even though I know he is not as far advanced as other children his age, I love to watch his reading come along and how he forms his letters in the air with his pointy finger. It melts my heart.

So in the grand scheme of it all, missing a school play to show what he has been learning isn’t the end of the world. I can see what he learns in all the little things he does. I can see his progress in the way he plays with his brothers at home. I can hear it in the beautifully words he speaks now thanks to daily speech and language support.

Today isn’t the day for a school play, but maybe next time will be.

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When My Autism Leaves Me Tongue-Tied

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My presentation of autism does not often render me unable to speak. Although, admittedly, I struggle with oral communication and am a much more fluent and comfortable writer, I did not have language delays as a child, and I am fully capable of talking in most daily activities. It turns out that it can actually be somewhat common for usually verbal (or even loquacious!) autistic people to have periods or situations where they can’t speak for one reason or another. I had no idea. Indeed, this happens to me somewhat regularly, particularly when I am scared or anxious or shy.

The emergence of this behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not always set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice. Sometimes, I’m not even aware this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me.

Sometimes I just watch in awe, oblivious to my non-participation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses. When I’m aware that I’m in this state, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree.

One frequent situation in which this side of myself decides to assert herself (which is ironic because in doing so, she prevents me from being assertive!) is during medical appointments. No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring for reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly a nodding, shrugging and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow.

While thankfully doctors usually have their patients’ best interests in mind, so it’s not like I end up agreeing to something counterproductive, I often fail to get my questions answered, which leaves me anxious or uninformed. I think it’s important to continue to strategize how to handle appointments or other situations that cause this issue, so that I can have the best possible outcome, and feel confident, safe and empowered.

Follow this journey on Processing Problems.

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Thinkstock image by finwal

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To My Autistic Grandson on Your Birthday

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When my babies were born, my mom gave me some great advice. She told me I should write down all the things my kids did or said because she knew how easily I would forget. Like most great advice from my mom, I only halfway heeded it. I started a journal I wrote in occasionally, but I was lazy. I wanted to. I really did. But life took over and the kids grew up.

I found that journal a few months ago and read it. Although I hadn’t written much, it brought back so many memories. Cherished memories I had forgotten. It was really great advice, Mom, so I resolved then and there to start a journal for my grandson Noah. This is how my blog started. I guess you could say I took this whole “journal writing” thing to a whole new level. However, these random thoughts I put to paper are not necessarily the things I want to tell Noah. They are just my thoughts. My coping technique. When he grows up, I want him to be able to see how much progress he made every year. So I decided to write him a letter on every one of his birthdays. I missed his 1st birthday, so this is his first annual birthday letter.

My dearest Noah,

You came into this world much like you would spend your next two years. Very quietly. As soon as you were delivered, you were transferred to a little warmer with bright lights shining down in your eyes, and the nurse started, very roughly I might add, to clean you off with towels. Your little eyes were swollen and your skin was tinged blue with the very typical cone head that newborns have. You looked around and let out a little grunt of discomfort, or perhaps irritation, at the fact the we had removed you from such a warm comfortable place.

Your eyes darted around the room, trying to process all the information they were seeing. The lights were so bright. The voices so loud. I’ve always wondered if the process of being born is scary. What goes through an infant’s mind as they emerge from their watery, safe cocoon? Some enter the world screaming and thrashing about as if in pain, or at the very least, confused. But you, my little blue-eyed wonder boy, were just the opposite. After your initial grunt of disapproval, you stayed really quiet. You were so quiet, in fact, that I think you had the nurses a bit worried. I could hear them say, “He’s not crying.” After a quick once-over by the nurse, she gave you the OK and wrapped you up tightly in the little striped hospital blanket, put a tiny knit hat on your cone-shaped head and placed all six pounds, nine ounces of you in your exhausted mommy’s arms.

Your eyes began to focus on her face, and your little tongue was jutting in and out, like a baby snake, as if you were tasting the air. It was one of the most beautiful things I’ve ever seen. You two, staring into each other’s eyes. Both of you were exhausted, but your mommy was on cloud nine. You absorbed your mommy’s gaze like a wildflower absorbs the sun’s rays and gazed right back. Never making a sound.

If I only knew then what I know now…

The first couple of months with you were quite the roller coaster ride. Not because you were a difficult baby; just because you were a baby. You had a lot to teach us and we had a lot to learn. Your G-Paw and I were surprisingly out of practice and your mommy was just a beginner, and trust me — there’s a big learning curve.

Through all the attempts at diaper changes and people coming in and out and dogs barking and bottles that were just a bit too cold or a tad too warm, you remained calm. Crying only when you were hungry or wet. Never complaining about the amateur way you were being held or cared for. You were so patient with us while we learned how to care for you. Always sleeping best on G-Paw’s chest. I would call you a “soap opera baby” because, just like the babies on TV, you were always so quiet and content. I remember watching those shows when my kids were babies and thought, “That’s ridiculous. Babies are never that quiet.” But you were.

If I only knew then what I know now…

Around 5 months old, you started watching “Sesame Street.” A lot. We had to put a time limit on it because it was just too easy to let you watch it. It would keep you occupied for the whole 30 minutes. Without a peep. You would smile at the characters and even giggle at them occasionally. You would turn your head to follow the TV better than any toy or hand movement or person. We laughed about it and said how cute it was that you loved “Sesame Street” so much.

If I only knew then what I know now…

You started becoming mobile at around 7 or 8 months. You were starting to crawl and pull yourself up. You were giggling and playing and just being an all around great baby. But it was here that we started to notice. You weren’t clapping yet. You weren’t making eye contact enough. You weren’t pointing yet. Something was different.

If I only knew then what I know now…

Over the next year and a half, the light inside of you started to shine brightly in our house. You lit it up with hilarious giggles when we played peek a boo with the stuffed Elmo. You would shriek with delight at the sight of bubbles and slides. You learned to walk and then you learned to run. And climb. Boy, did you learn how to climb. Going outside became an insatiable daily desire. You became obsessed with anything that had to do with the alphabet or numbers. You even learned how to put a whole ABC puzzle together by the time you were 18 months old. We were so proud of you! But you still wouldn’t talk.

If I only knew then what I know now…

Somewhere in there, we took you to see a doctor, and he told us about your autism. At first, we were sad about it. We didn’t know what it meant. We were scared. But soon, we learned how to take care of you, and you worked hard for us. You patiently went to every therapy appointment twice a week. You learned how to use some sign language and point for things you wanted. You started to make a little more eye contact. You learned how to lead us where you wanted to go by grabbing our finger and taking us there.

And you learned how to fly.

You have taught this family more things in these two short years than most people could even conceive.

You’ve taught us to trust ourselves more than we already did.

You’ve taught your mommy that she is stronger than she ever knew.

You’ve taught us that a diagnosis of autism isn’t the end of the world.

And you have taught us all to fly.

And you know what?

If I only knew then what I know now…

I wouldn’t change a thing.

We love you, Noah.

Just the way you are.

Your mommy adores you.

Your G-Paw thinks you hung the moon.

And I think you are just about the sweetest baby in the whole wide world.

And as I listen to your heartfelt, deep down belly laughs coming from the next room because of tickles from your mommy, I know you have so much more to teach us. You have so much to teach the world. And we all can’t wait to learn.

Follow this journey on G-Maw and Noah.

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Thinkstock image by SbytovaMN

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Niko Boskovic Denied Prize Trip Because He Is on the Autism Spectrum, Family Says

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After winning an essay contest sponsored by the Odd Fellows – a national fraternal organization – Niko Boskovic, a 15-year-old on the autism spectrum, has had his prize withdrawn. According to his family, the prize – a trip to the United Nations – was rescinded after officials learned Boskovic is autistic.

After winning the essay contest for the Portland, Oregon region, Boskovic’s mother, Loreta Boskovic, emailed Charles Cloud, the Odd Fellows jurisdictional chairman for Oregon, the Oregonian reports. In addition to the information requested by Cloud, Boskovic’s mother added a note saying she would be accompanying her son on the trip. Boskovic is nonverbal and requires a letter board to communicate, Loreta explained.

After failing to hear back from Cloud regarding her emails, Loreta pressed further and was told that despite winning the competition, it was not guaranteed that Boskovic would be allowed on the trip.

“I kind of worked up the courage and called the Board Chair of the UN program and asked him what’s going on with this,” Loreta told FOX 12. “[I] was basically told ‘we can’t support people with disabilities, we’ve had people in wheelchairs before, we’ve turned them away too.'”

Loreta offered to pay $1,600 out-of-pocket so she and her son could both attend the trip and was told chaperones were prohibited – despite the fact that Loreta would be functioning as an interpreter for her son.

David Scheer, the secretary of the local lodge which awarded Boskovic the top prize, called the national office asking for an explanation.“We were told they don’t have the staff and knowledge to be accountable for someone with a disability,” he told The Oregonian.

The Portland-based Odd Fellows lodge which named Boskovic the winner said they will not be participating in the competition again until the rules are changed to include people with disabilities.

“I wanted to go to educate people about autism…. I have very little patience with people who dismiss me because of my disability,” Boskovic told FOX 12 through his letter board. “Someday I want to study science and hopefully times will change and this type of nonsense will stop.”

The Mighty reached out to Odd Fellows’ national office and has yet to hear back.

 

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