The Time a Sparkly Red Tuxedo Completely Changed My Son

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It all started with the purchase of a sparkly red tuxedo.

He bought the sparkly red tuxedo because he wanted to dress like Shoji Tabuchi when he fake played his fiddle. My son Casey is 28 years old, has autism and epilepsy and is an avid Shoji fan. He has all of Shoji’s music in all its various forms: VHS tapes, DVDs, CDs and cassettes. He silently plays along with Shoji, physically scripting if you will, the movements Shoji makes as he plays. His own fiddle never makes a sound.

Casey and I had set off that day in search of fall colors, but the farther we drove the more I realized I might have planned this trip a little too early; all we saw was a forest of green. Trying to save the weekend outing, I headed to Branson, Missouri, knowing Casey would forget all about red and yellow leaves if I offered a Shoji show instead.

Sure enough, the excitement grew as we began to see the numerous billboards that dotted the highway promising oodles and oodles of musical fun. The closer we got to our destination, however, the worse I was feeling. I was coming down with something, and by the time we checked into a hotel the last thing I wanted to do was leave. So I promised Casey I would bring him back for the Christmas Show the following month and maybe we could do some shopping on our way out of town the following day.

One of the few things Casey likes more than a Shoji show is shopping, and I vaguely remember mindlessly repeating, “Yeah, Casey, sure we’ll get you one of those,” as I fell into a deep sleep. I woke the next morning to him on his phone with my dad telling him that I was taking him shopping for a Shoji Tabuchi sparkly American flag jacket… oops!

After an exhaustive search (thankfully I was feeling better) we stumbled upon the Touch of Class formal wear store. Aside from regular formats, they also carried stage clothing — not much, just a few suits, but Casey spotted the red sparkly tuxedo the second we walked in and went straight to it. They didn’t have an American flag version so there was no way he was leaving without that tux. The price was a little much, but he had some money he’d saved up, and I covered the rest, which cost less than another night in the hotel and tickets to the show.

The day we bought the tuxedo there was a beautiful young lady getting a final fitting on her wedding dress. Casey kept giving her sideways glances as he tried on the tux (it surprisingly fit perfect), which I thought meant he was shy and nervous. But to my surprise it meant so much more. He knew that soon his younger cousin, JoAnna, would be getting married and apparently as he watched the young lady twirling happily in front of the three-way mirrors, he started to plan how he would play a leading role in his cousin’s upcoming nuptials.

The red sparkly tuxedo seemed to have magical powers on Casey. He had a confidence we’ve never seen before. Usually Casey is terrified of crowds, and in the past we’ve always had to stand at the back during family weddings because he’s so nervous and finger-stimming throughout. But as the wedding day approached Casey announced he would be walking Jo down the aisle.

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JoAnna was thankfully excited that Casey wanted to play a part in her wedding and didn’t mind at all that someone in a sparkly red tuxedo might upstage the bride, as long as that someone was Casey. We had no idea how Casey would react when the doors opened and all eyes were upon him so we had arranged for him to walk Jo down the aisle for the photographer before anyone else arrived. This way her father would retain the traditional role, but Casey would have his special moment with Jo without the stress of an audience.

I cried. Oh yes, I cried when my son confidently walked his cousin down that aisle.

In that one joyful moment, there was also sadness — sadness in the knowledge that he will never walk his own daughter down the aisle.

Each time one of his younger cousins has achieved a life moment like this, there’s a little piece of my heart that aches. That poor little tattered piece of my heart has been through a lot…

I remember when his cousin, eight months younger than he and raised like a sibling, went on her first car date; I bawled like a baby. How was it possible that she was dating when Casey was still in diapers?

When his sister, Sam, got her driver’s permit, she jumped behind the wheel of the car, and I got in the passenger seat. From the back seat, we heard Casey’s panicked voice: “She’s not suppose to do that! The cop’s gonna ‘rest you, Samanda N’cole Wason!” He simply couldn’t believe that I was going to allow his sister to drive the dangerous car. We knew he meant business; it’s bad when he uses all three of her names. For some reason this broke my heart. It was the first time he seemed to notice that the others, his younger cousins and his baby sister, were growing up and leaving him behind.

When my nieces welcomed their babies into the world, I cried. Even these most joyful of moments had pangs of heartache, as I was reminded once again that this was not my reality, not Casey’s reality. I’m Granny Bill to those babies and my sisters have graciously shared the grandmother role with me for Lexi, Avery and Chase (and two more are on the way), and I’m thankful. But these moments, blessedly brief as they are, still hurt.

That’s why this moment in time meant so much to me. Seeing Casey, confident in his red sparkly tuxedo, walking JoAnna down the aisle as if she was royalty. The significance of that moment brought tears to my eyes and was not lost on Casey either, who was focused on his carefully measured steps. We had practiced… a lot.

My tears were for the future that would never be, but then JoAnn’s 5-year-old daughter, Lexi, who was standing next to me as Casey and Jo, came near said, “I wanna walk the aisle too!”

Casey didn’t hesitate, he simply reached out and took her hand in his and escorted both mother and daughter down the aisle. Seeing Lexi look up at him with love — in that instant the heartache was gone and pure joy filled the void. Because when he took her hand, I saw a future where he plays an important role in Lexi’s wedding. I could see Jon, her daddy, on one side and Casey on the other walking this precious girl down the aisle.

Casey not only walked that aisle with confidence, he went on to rock the whole wedding. Even though Casey knew very few of the groom’s family members he spoke to several and hugged more than a few people he’d never met before.

But the real shocker was his desire to dance. He danced with us all, stopping briefly for a snack from the nacho bar, then went back on the dance floor. He would finish a dance then look for and choose his next partner. Without a word and while standing in the middle of the dance floor with all eyes upon him, he would point to his next choice, then wave her out onto the floor. He didn’t just reserve himself for the girls. The groom got a dance too, as did his Papa and his cousin, Jimmy. It was such a joy to watch.

JoAnna had included (just for Casey I believe) the chicken dance song among her reception music choices. This thrilled Casey to no end, and his eyes lit up as he recognized the song within the first few bars. A large group of us danced the chicken dance with him which was followed by The Cotton-Eyed Joe (another of Casey’s favorites).

He made it almost to the end of that song before I felt his grip tighten on my hand, seconds before he went into a seizure. It was a mild one, and we got him into a chair, but it was the end of his dance moves for the night. Someone got his wheelchair out of the van, and we headed home soon after that. But wow, what a night!

I know that Casey is going to walk a lot of aisles in his lifetime; this was really just the first. That red sparkly tuxedo is going to come in handy again someday! His sister, who, as Maid of Honor to JoAnna, got to see the behind-the-scenes aspect of a wedding for the first time has announced that she will be skipping all that mess and going to Vegas when her time comes. But for her brother’s sake, she plans to have Elvis officiate the ceremony… which will make it every bit as much of a joyful experience for Casey as it is for Sam.

I bet Elvis will love Casey’s sparkly red tuxedo.

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When My Son With Autism Noticed a Man With Prosthetic Legs

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Several years ago, during one of our holiday trips, we went shopping at Downtown Disney. For those who aren’t familiar, Downtown Disney is an open mall, filled with shops and restaurants. The stores were crowded with vacationers and locals enjoying the holiday decorations.

As always, my son, Mike, was walking in front of me. I typically walk behind him. I guide him through crowds verbally and redirect him as needed. He tends to walks at an extremely fast pace; whenever I get ahead of him, he speeds up to pass me.

As we were walking through one of the stores, Mike spotted a young man standing in line to check out of the store. The man was in his twenties and had two prosthetic legs. His father was standing behind him and noticed Mike’s course correction in their direction.

Mike was on a mission and, in his excitement, picked up his pace. I immediately knew where he was heading and started chasing after him, calling his name – anything to slow him down. In my mind, I was hoping I could explain his autism before he invaded their space.

As I was rushing over, I locked eyes with the young man’s father, he smiled and mouthed, “It’s OK.” I immediately felt some relief – at least he understands.

As we approached, I began apologizing. I started explaining that Mike is attracted to uniqueness in individuals. Before I could get the words out, Mike hit the floor to examine this young man’s prosthetic legs. Did I mention we were standing in a crowded store? The young man and his father were extremely kind and understanding – assuring me it was all right.

As quickly as he hit the floor, Mike stood up. He looked the young man in the eyes and said this:

“High five, Robot Legs – awesome!”

The young man gave Mike the high five, looked at me, and said:

“Thank you – I needed that.”

This post originally appeared on Autism Hippie.

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To My Daughter, Who Didn't Choose to Have a Brother With Autism

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“This is Max, my baby brother. Don’t hurt him.”

That’s how Stevie would aggressively introduce her little brother to people when she was 3 and he was 1. It made me laugh, but I knew then that she’d always have his back. I just didn’t realize the extent to which it would go. It wasn’t until more than a year later that I learned Max had autism.

Being a single mom isn’t the easiest gig, especially when one of your little ones tends to wander — or more often bolt, as kids with autism do — because he doesn’t understand the dangers of crowded places, parking lots and busy streets.

Stevie has grown to become my second pair of eyes, always watching over Max. I never asked her to and she doesn’t think twice about it. It’s second nature. It’s just the way it is in our family. And I wouldn’t have it any other way.

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She tells him to come back when he skips down the driveway before he gets too close to the street. She grabs him when he jumps out of the car in a parking lot before I’ve even had the chance to get my seatbelt off.  She runs after him in Target when he races down one of the isles for fun. She follows him in the grocery store when he wanders off to the freezer section to watch the auto-sensor lights go on and off.

Stevie taught Max how to buckle his own seatbelt. She talks to him in a sweet, calming voice when he’s getting aggravated in the car. She translates his words when people can’t understand him. She tells him he’s going to be OK when he’s getting anxious during a haircut, a doctor’s visit or any place where he feels uncomfortable.

At just 10 years old, she’s the ultimate big sister. And until now, I’ve never properly thanked her. I am so grateful to her for just being herself: kind, helpful, protective and funny as all get out. I don’t know what I’d do without her as she keeps me laughing every day with her quick wit and comedic lines that you’d think an adult wrote.

She didn’t choose this position of big sister to a little brother with autism. It’s not always easy. He breaks her stuff, yells a lot and needs a ton of undivided attention. Sure, she gets mad –maybe sometimes a little jealous — but she takes it all in stride. I’m so thankful to her for always having her brother’s back and for being the eyes in the back of my head. Thank you, my Stevie, for being the best big sister. 

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Our Special Needs Marriage: The Good, the Bad and the Ugly

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“Why is he doing this?” my husband yelled with evident frustration after seeing another hole punched into the wall and scattered remains of the bookcase on the bedroom floor.

“I think it might be because he has autism,” I answered sarcastically (because, you know, I’m super gracious like that).

This marriage thing… it’s not for the faint of heart. Add a little high-functioning autism with some acute sensory processing disorder on the side? Well, let’s just say it gets ugly.

I love my husband. He loves me – so much in fact that I’ve already felt compelled to write a couple of posts about how awesome and cool he is. And he is. Seriously.

And the reality is we’re two human beings, sinning all over the place and all over each other all of the time. Of course it’s a marital disaster around here, sometimes more often than not.

husband and wife laughing together

So in the interest of balanced disclosure, allow me to share some of the crazy that is just part of us being married while parenting two special kids.

1. We Blame Each Other… A Lot

It’s kinda weird but true. I know for a fact my husband isn’t the reason my kids are who they are (I can’t even hold him genetically responsible), but that doesn’t stop me from blaming him for not somehow making it better. We’ve had entire, long, drawn-out arguments over me thinking if he would just fix his work schedule or have a plan for the weekend, then everything would be fine. Seriously. I do this. Too often.

I’m not alone. He blames me too. Usually because he thinks I’m somehow not parenting the boys well enough to overcome their challenges (even though logically he knows it’s impossible to do). For example, a couple of weeks ago, Mick said to me he feels like he can’t leave the house without things getting crazy (I, being the astute reader of all things between the lines, took this to mean he thought I wasn’t doing a good enough job with managing the boys). I believe my response was a sarcastic, Oh really? ‘Cause it’s so much better when you’re here? Face it. Our life is crazy. It’s crazy with you. It’s crazy without you. Pick any day. It’s crazy!”

Not good.

What is good and has helped us recover quickly from these types of situations is to take some time to calm down. We try to never fight in front of the boys. They have enough stress. They don’t need us to add to it. Taking time to fight later when they’re in bed or otherwise occupied also has the benefit of allowing us to both calm down and think about what’s going on. Most of the time, one or both of us come back into the conversation with a little more grace for the other, and we can work it out from there.

2. I Totally Think He Doesn’t Get It

I’m being completely honest here. One of the things that affects our marriage is my pride. Ugh. I hate writing that, but it’s true.

My husband wants my respect. And the truth is, I do respect him. I respect him, and all too often I also think he just doesn’t get this whole autism thing, or the staying-at-home-with-kids-all-day thing, or how-to-help-a-dyslexic-boy-learn-to-read thing. Because of this lie, I often dismiss or downplay his perspective in parenting our boys. This causes all kinds of mess. It creates distance in our marriage. It makes him feel like he isn’t capable (even though he totally is) in parenting our boys. And I miss out on having a different perspective when I desperately need one.

He’s offered some of the best insights as to how to connect with our one son and his interests. He’s inspired our other son to see all of his gifts and not just the fact that his brain struggles to read. Most importantly, he’s done this in ways I never would have done or even thought useful at the time.

So, I’m wrong. He does get it. He gets it in his daddy way, which is different but no less good than my mommy way.

3. We’re So Sleep Deprived

Nothing creates an environment for marital strife, in my opinion, like not sleeping well for a few years. This goes without saying, but seriously, it matters. If affects the way we interact with the boys and even more so with each other. Our worst fights have been in seasons where we were getting a maximum of eight hours a sleep a night between the two of us.

husband and wife slouching on chairs

I wish we would give ourselves and each other more grace because of this . There are times I want to say maybe we should stop talking about this and go sleep for a few days and then see how we feel… but then duty calls, sometimes all night long. And that’s just how it is.

I’m grateful that when the boys do leave for visits with their dad, we purpose to lighten the load at home and work. We sleep a little later, eat out or fix basic meals and use the time to recharge, reconnect, and to actually sleep.

4. We Have Had to Learn To Be on the Same Team

We don’t always act this way, but we’re learning that two people fighting the good fight together, instead of at one another, is by far a better way to live. We sometimes have to remind the other that we’re on the same team, that we’re working towards the same goals, that we both want this to be a success. It seems odd that we need to, but we do.

It helps to remember that God brought us together for a reason. He made us husband and wife and gave us these unique little guys with a purpose. That matters to us. It’s meaningful in the moment. It takes our eyes off each other and fixes them on the things above, where the view is so much better.

husband and wife raising arms above their heads

I love this man. I love our marriage. It’s good. It can also be bad. It can also be ugly.

Special needs or not, what marriage isn’t?

This post originally appeared on Not the Former Things.

The Mighty is asking its readers the following: Can you share a moment on your special needs journey that strengthened your relationship or marriage? 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.

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Inspiring Video Offers New Way to View People With Autism

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Autism Spectrum Australia has launched a campaign asking the world to see people with autism spectrum disorder not as different, but as a different type of brilliant.

The organization released the video below yesterday in the hopes that it will spur more positive dialogue around the disorder, according to SBS News.

So often wonderfully talented, brilliant people with autism spectrum disorder are overlooked by society as being odd or quirky or obsessive,” Adrian Ford, CEO of Autism Spectrum Australia, told the outlet. “With our a ‘Different Brilliant’ campaign, we hope to inspire a wider understanding and respect for how people on the autism spectrum are just like you and me, in many ways, but with their own uniquely brilliant take on the world.”

The powerful 90-second film features people on the spectrum and offers a message of acceptance and inspiration.

Enjoy the video below: 

 

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Why I Don't Have the Luxury of Anger

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You don’t get the luxury of anger as a parent. Anger feeds chaos and disorganization and hate. I don’t get to be angry because my son, Kreed, does this or that or doesn’t do this or that. When I’m angry, it solves nothing. Angry wastes my time. It’s unproductive. It doesn’t make me happier.

It takes away joy. It takes away happiness. It sucks the life out of everything. When I rage in anger at any of my children, inevitably it makes the situation worse. Kreed doesn’t know better. Even if he does, he can’t always comprehend his consequences and his brother, who has Asperger’s, is still unable to see longterm consequences.

I want to be angry at so much. Most people don’t ever hear me talk about this. I’m patient, I’m kind, I teach. I’m that way because I don’t spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger — all I see is what is in front of us right now, and I have to deal with it.

Sure, some people can be angry that then I don’t have these super huge dreams for the future. But why? I can’t predict the future. I can’t change the past. I have my present. I can improve my situation from the past, and I can plan for the future. So I figure it’s win-win.

I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different — that if things had gone differently, he would be driving or dating or thinking about college. But why? It’s not our present. It’s not our life. My life is giving Kreed the happiest life possible and to always, always teach him so he will continue to interact with his environment and people in the way he wants. That’s our life together. I can’t separate my life from his to any meaningful degree because we’re connected on levels most people would never understand.

Can I go out and have fun while he enjoys his respite time? Absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular, and after those brief moments of time, everything comes back to how it is daily.

A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapies. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn’t matter anymore what started Kreed down this path, only the progression. I don’t care what celebrity has this or that because they don’t live in our life or help in any way. I don’t fight about therapy because Kreed is 17 and we know what works and what doesn’t, and I don’t care if other people do the same or not — our kids aren’t the same. I don’t have the luxury of anger in our life for our actual life so I certainly don’t have the luxury of anger for things that have zero bearing on our life. I’m too busy immersed in the life every day, 24/7 to give a care about what anyone else is doing or how they feel about some celebrity who may or may not be on the spectrum.

I don’t have the luxury of imagining a life that’s different or better. The life is how it is. Whether it’s helping Kreed succeed in communication or his brother to succeed in being independent — they’re the children that were brought into this world with the promise they would be loved unconditionally and supported to fulfill their dreams. It doesn’t matter if autism entered the picture or Asperger’s or Kreed’s thousands of medical issues. It just is. I can’t change it, but I can make things better. 

Some nights I might cry. Some nights I might yell. I’m only human. Some nights I feel numbed out. Caring for Kreed is a 24-hour-a-day, seven-days-a-week job. For life. Some days things go easy. Other days he rages without cause, and I just keep him safe. I always try to figure it out. The more I figure out and teach him, the better he is in the long run. I don’t get angry for long because time is too short and precious for that. 

Then I would miss moments like these:

mom and son hugging

Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there’s too much rage and poop or pee or nakedness or days and days of sameness. But it’s not about the moments that make me angry. It’s about the moments that make me happy and him happy.

And I know in the end, our life is enmeshed and for whatever reason we’re working hard to show the world Kreed and what we do to help him be successful. We’re working hard to do what people didn’t think was possible and for people to understand that our kids have no limits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all — this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry yesterday, I try to find more joy in the new day.

Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else’s. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed’s dimples so you read about our journey. But at the end of the day, it’s our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my newsfeed because it’s not part out our truth. At this point in our life, our truth is all I can handle.

And for the boys affected and struggling, I don’t have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

This post originally appeared on Kreed’s World.

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