6 Gifts That Come Packaged With My Autism

Hi, I’m Sue. I’m a 32-year-old Aspie. I was diagnosed last year and have learned a lot about myself, about why I am who I am. It was a really wonderful experience to learn that there was a name for some of my hurdles in life, but more importantly, the gifts as well! Here are some of my thoughts about what autism means to me.

What does autism mean to me?

1. It means appreciating life’s finest details. That bright green leaf on the porch. The intricate patterns in a cat’s eye. Something that no one else finds amusing but you find hilarious in some strange, weird way. I like being able to appreciate the little things. It makes each day so worth it.

2. An affinity for gadgets, and a gift for figuring them out. Who needs the manual when you can take matters into your own hands? Have questions about the latest Android phone? Let me at it! I’ve had this gift as long as I can remember. I learn best by doing hands-on activities.

3. Loyalty. Always being there for a friend or family member through thick and thin. Somewhat of a fear of letting others down, and making sure that doesn’t happen. Being someone they can count on. I’ve always stuck by my friends, even at my own expense at times, when they have proven to be anything but.

4. Honesty. Calling it like you see it. A natural genuineness. Knowing how to be no one but yourself. In school I was always “different.” While the other girls were concerned with makeup, boys and what others thought of them, none of this mattered to me. I was happy being the tomboy I am and playing my video games!

5. Seeing the world in black and white, but at the same time, through rose-colored glasses. Taking things literally. Not reading between the lines or seeing hidden agendas where there are none. Always looking on the positive side. Assuming there is good in every situation. Again, many times this is at my own expense. I see the good in people, and give them the benefit of a doubt. Unfortunately, this has led to my being taken advantage of by people whom I trusted and considered friends. At the same time, I’d still rather see the glass as half full.

6. Finding the fun in life. An eternal childhood. Feeling younger than your peers, and enjoying it. Never growing old. At 32 I’m still very much a kid! I live for anything fun, and I don’t feel anywhere near my age. I love having that childlike sense of wonder, and I hope never to lose sight of it. I don’t think that’ll ever happen.

I hope those reading this will see just some of the many gifts that come packaged with my autism. It’s the way I see my world, 24/7. I can’t imagine life without it. Autism is a huge part of what makes me me!


5 Things I Wish People Knew About Dwarfism

I’m just a guy who is 48 inches tall. I speak only for myself and no other short-statured or average-sized individuals. Here are a few things I’d like the world to know about living with dwarfism.

1. Dwarfism is not my identity.

I am not a halfling to be pitied, a pet to be pampered or an object to be fetishized. I am not an inspiration. I am a human being figuring out this thing called life one step at a time, just like you.

2. Dwarfism doesn’t neutralize my feelings.

My silence in the face of your looks, stares, pointing, giggles, comments and countless other feeble attempts at wit and not-so-subtle ways you attempt to demean me shouldn’t imply I am unaffected or too timid to respond. Perhaps my silence belies the strength that comes from successfully thriving under the weight of challenges that might crush your soul before you reached the first hundred yards of walking a mile in my shoes. Perhaps I choose to take the higher road by not bringing to your attention the very shortcomings within yourself that you strive to deny that all the world so clearly sees.

Clay Rivers the mighty.3-001

3. Dwarfism doesn’t limit my human potential.

While the chances are slim to nil that I will be contracted as a member of an NBA, NFL or MLB franchise, there are dozens — if not hundreds — of other options available to me to which I am better suited. A palette of only red, yellow, blue and black in the hands of a novice is a limited range of colors; that palette in more experienced hands is a means to a painting rich with a spectrum of color.

4. Dwarfism is not a license for you to express your thoughts to me regarding my physical appearance.

After my first few years on the planet, I was well aware that I was shorter than the general population. So there’s no need to tell me I look adorable, cute, fun-sized, little, short, small, tiny or how much you’d like to just pick me up and love on me (I can tell by the gleam in your eyes). I know this. This includes pats on the head and any other unsolicited public displays of affection reserved for pets. I exist for your commentary no more than you exist for mine.

5. Dwarfism is a medical condition.

While it may be one of the first things you notice about me, it’s only a small portion of who I am. Think of my dwarfism much the same way you would your hair or eye color, weight, emotional disposition or race. These things are but only a piece of the whole of anyone. Perhaps dwarfism, like so many other anomalies of human nature, is one of the ways God reflects the humanity in us all.

Now if you can identify situations in your own life that parallel my experiences with dwarfism — bravo! You, my friend, might be an honorary little person. Your membership card is in the mail.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

We Love This Woman’s Duet With Her Brother Who Has Down Syndrome

Leah Kirwan, from Louth, Ireland, has a beautiful voice, but that isn’t the only thing that makes the video below so special. It’s Kirwan’s duet partner, her brother Noah, who really steals the show.

Kirwan sings and plays the guitar while Noah, who has Down syndrome, sings along to the song “Titanium” by David Guetta and Sia.

Thought I’d do a duet with my favorite little man singing his favorite song,” Kirwan wrote on her Facebook page where she posted the video below on August 29. It has since been shared nearly 6,000 times.

Enjoy the adorable performance in the video below:

Thought I’d do a duet with my favourite little man singing his favourite song, Titanium

My 5 Tips for Planning a Birthday Party for a Child with Autism

I am the mother of a 4-year old boy on the autism spectrum. After some semi-successful parties, and one mother-of-all-birthday-party meltdowns, we finally had a truly successful birthday party for my son. The guests had a fun time, I was relaxed and more importantly, my son, Brandon, had a meltdown-free, wonderful time. This is what I’ve learned along the way about planning a birthday party for my child with autism.

1. Chose a familiar location.

We are fortunate that Brandon’s birthday is in mid-August, when the weather is perfect for a backyard party. Two years ago, we purchased a child-size bounce house. This year, we purchased a child-size inflatable water slide (from Target) as his birthday present and we set both of them up in our backyard. These investments have been well worth it, especially when you consider how much it costs to do a party at a typical facility. Bottom line — pick a party location that your child loves and is already familiar with. Or, if you do plan the party at an unfamiliar place, I suggest doing a practice run first so your child knows what to expect.

2. Save the presents for later.

Having lots of people in one place is a lot of excitement for anyone. For someone on the autism spectrum, it can be incredibly overwhelming. Opening all his presents while everyone is gathered around him is just too much. By now our party guests already know that he’s not opening presents at his party, so it’s a non-issue. However, in the past when someone handed me a present, I did explain that we would be opening presents later that night when things were calm. That way people weren’t hanging around waiting for us to open presents so they could leave! After guests leave, we open a present here and there throughout the night.

3. Consider sending out invitations a little late.

By the time we invite all of Brandon’s friends, our family friends and our actual family, Brandon’s birthday parties get rather large. That many people in one place is far too overstimulating for Brandon. This year, I sent out invitations much later than I typically do. Some people already had plans so they couldn’t come. This works out great because I didn’t have to cut anyone from guest list (which I couldn’t bear to do), and I can still keep  the attendee count relatively low.

4. No schedule!

I can’t stress this enough. Just go with the flow. The party started at 11, and whatever happened at that point happened. I just let Brandon and the other kids do their thing. We didn’t stop to do any structured games, move to any different rooms or sit down to eat together. I put a buffet of food out and let people eat as they pleased. It was very easygoing.

5. Don’t sweat not doing the “normal” stuff.

This year, we didn’t sing “Happy Birthday” or even blow out candles. If you don’t have a child with special needs, this might seem sad to you. It is a little to me, too. It’s not exactly what I envisioned. But we special needs parents are hyper-in-tune to our children’s temperaments. It wasn’t going to happen for Brandon this year. He was keeping it together, but was a little tense. He had a “Yo Gabba Gabba” Plex cake, so I just showed it to him and cut into it. He didn’t even want any cake until much later in the party. He was just too overwhelmed.

I didn’t try to get him to eat any cake or force him to come over where the party guests were. It’s his party! I just let him do what he wanted to ensure he had a fun time. That’s what it’s all about, anyway. Besides, when he was ready, he grabbed a fork and dug into it himself!

Follow this journey on Ramblings of a Special Mom.

10 Things I Never Expected to Do as a Parent

When I was pregnant with my first child back in 2006, there were things I expected to happen. I expected diapers, crying, toys everywhere, the occasional sniffles, the first day of school, family pictures, etc. I got that and so much more. The diagnoses of Down syndrome, AV canal heart defect, Wolff-Parkinson White syndrome, asthma, sleep apnea, GERD and a lung cyst all brought unexpected things to my parenting experience.

As I measured the bald spot on the back of my daughter Jaycee’s head last night to see if it was getting larger, I thought, “This is something I never expected to do as a parent!” And yes, if you are curious, it was a half centimeter larger than a few weeks ago.

Here are 10 other things I never expected to do as a parent:

1. Choose my daughter’s hairstyle based upon a BiPAP mask. If her hair gets too long, the mask doesn’t seal as well. Plus, the headgear makes wrinkles and uneven waves in her hair. That’s why short hair is the best style for her.

2. Leave a pharmacy with a bag full of medicines for my child every month.

3. Arrange my daughter’s furniture in her room based upon her medical equipment and outlet locations. Her bed has to be near an outlet for the BiPAP and nebulizer. Her chair must be close enough to another outlet for her airway clearance machine.

4. Wonder if my child was going to die. Yep, I never expected that one. But more than once, a bad news talk from a doctor left me wondering what was going to happen and praying Jaycee would live.

5. Buy diapers for nine years and counting for the same child. Thankfully, she just needs them at night.

6. Carry a bag with a change of clothes for my 9-year-old when we go out. Now her accidents are rare, but they can be expected if she’s in unique or stressing situation.

7. Perform so much speech therapy on my own child. As a speech-language pathologist, I never imagined using my training in language, apraxia of speech, and feeding treatments on my own child.

8. Interpret my child’s attempt at communicating with others for years. Around me, Jaycee uses many signs, gestures and some word approximations. I never imagined being an interpreter for my 9-year-old child, but I’m happy to do it.

9. Dread a phone call from my child’s teacher so much. Due to Jaycee’s breathing issues, I hate to see the school show up on my caller ID. Let’s face it, school professionals usually don’t call with good news, but I’m worried a call from them means Jaycee’s breathing is in trouble.

10. Be so proud of someone who doesn’t achieve the typical things. There’s no “My kid made the honor roll” celebration or a high-five because she made a sporting achievement. But I’m proud. I’m proud of her efforts. I’m proud of any attempts she makes. I’m proud of her Special Olympics competitions. I’m proud of her trying to write her name. I’m proud of her for saying her 15 words. I’m proud she can put soap in the dishwasher. Her small victories make me proud.

Maybe parenting Jaycee hasn’t been everything I expected. But, that doesn’t mean that it hasn’t been worthwhile and fulfilling. I like being Jaycee’s parent. Jaycee is always good for a hug and a kiss. She is the first one to notice if I have any kind of scratch or injury and responds by signing “mom hurt” followed by a soft kiss. When she is sad or upset, “mama” is the name she always calls, and that always makes me feel good. But beyond that, she’s expanded my parenting experience. I am capable of completing more odd tasks (like measuring a bald spot) and managing more intense emotions than I ever dreamed possible.

Follow this journey on A Special Purposed Life.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

The Perfect Thing My Boyfriend Said After I Told Him About My Mental Illness

Before my boyfriend Skyler and I started dating close to two years ago, I had one annoying, persistent and anxiety-ridden question racing through my mind:

How the hell do I casually mention I have a diagnosed mental illness?

Growing up, I felt like society had groomed me to keep my mental illness to myself and “sweep it under the rug” — as if mental illness had its own unspoken “don’t ask, don’t tell” rule. But the longer Skyler and I talked, the more I realized it was becoming important for him to understand the part of me I sometimes couldn’t comprehend myself. Thinking about how to explain it gave me anxiety, considering I couldn’t predict his reaction. I was terrified of the rejection and judgment some of us are all too familiar with.

In the past, I’ve had some interesting experiences when disclosing my disability. Some immediately categorized me as “fragile”; others didn’t grasp how much mental illness can impact your life. They didn’t realize when I say depression, I’m not talking about feeling down about a bad test grade. I’m talking about the emotional equivalent to watching paint dry.

I remember a specific instance when Skyler took me to Chipotle for a date after I’d mentioned I’d never been. I almost sent myself into an anxiety attack while standing in line, inadvertently questioning every little thing. How does a fast-casual restaurant work? What do I do? What if they ask me a question and I can’t hear them? What if I accidentally drop my money without realizing and don’t realize it’s gone until I get to the register? What if my card doesn’t go through?

I struggled trying explain these things to him without receiving a judgmental response, but I knew in order to produce a successful relationship, I needed to share that part of me with him.

Recently I heard an interesting analogy I felt described me perfectly: “[Some mentally ill] individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

When I was finally ready to tell him everything, it’s like a lightbulb went off. He understood me so much better and was able to piece together things he had been confused about, like why I physically can’t get out of bed on random days, or how I overanalyze the smallest thing.

He responded exactly how I needed him to: “You’re not your mental illness, I still care for you just the same, and I’m not going anywhere.”

Realistically, if I kept my depression and anxiety to myself, it would’ve made our relationship more difficult for both of us. Relationships are built upon communication and honesty. For us, we have to do a little extra legwork, but together we’ve learned to adapt. In my opinion, the journey of self-discovery is never ending. I discover new things about myself every day, and having someone to share that with and someone who loves every anxious bone in my body is worth every bump in the road.

I realized opening up to Skyler challenged me to speak up for myself. When I can’t fight by myself, he’s been there every time. He stays in bed with me all day when I’m too depressed to move. He’s come over at 4 in the morning to hold me while I cry when I can’t comprehend why I feel the way I feel. We’ve discovered when I have an anxiety attack, giving me long, hard hugs almost “squeezes” the anxiety out of me. He’s shown me I’m worth loving and loves parts of me I had a hard time accepting about myself. It gives me hope.

In retrospect, reaching out to Skyler increased my ability to ask for help and disclose my mental illness — something I should’ve never been scared to do in the first place. My relationship is my safe space free from stigma, isolation and judgment, and for that I can never be thankful enough.

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