Autism, Thank You for Giving Me Space to Parent Differently

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Dear Autism,

I wanted to take a minute to say thank you. Thank you for giving me permission to parent my kids differently than “they” all think we parents “should” do things.

Thank you for allowing me to search for opportunities to take classes on being a better parent. It’s not often you get to go to school to be a mom, but because of you, I get to take classes on a lot of different subjects. I think it’s made me a better parent, wife and person. As a bonus, most of these courses are covered by the government here in Ontario.

Thank you most for showing me pure happiness. One of the best things about autism is that it is honest and true. I get to see, feel and enjoy total bliss. It’s wonderful and contagious.

Thank you for opening my heart and allowing me to ask for help. I’ve met so many wonderful people along this journey. I feel blessed and thankful 80 percent of the time, which is a real gift.

Thank you, Autism. I never knew I wanted to meet you, but I’m a better person for having done so.

Love,

Blythe

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'Weird Al' Yankovic and Children With Autism Put On a Joyful Performance

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“Weird Al” Yankovic, a singer-songwriter known for his parodies of popular songs, shared the stage with Jodi DiPiazza, a 13-year-old musician with autism, on Sunday night for a heartwarming duet of Yankovic’s song “Yoda,” Time reported. At the end of the song, the Actionplay chorus, also comprised of singers with autism, joined in.

The performance was a part of Comedy Central’s benefit night for autism called “Night of Too Many Stars,” which since 2006 has raised more than 18 million dollars for autism research, as well as programs and services, according to Comedy Central’s website.

The last time Comedy Central hosted the event, in 2012, DiPiazza brought down the house when she performed the song “Firework” with Katy Perry.

Check out DiPiazza’s most recent performance in the video below: 

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When a Stranger's Facebook Message Changed My Life

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Finding support through this autism journey has not been easy. Most people are ignorant of autism, and I believe it’s one of the most misunderstood disabilities. People are not sure if they should say, “I’m sorry,” or if they should say, “Oh, my best friend’s child had something similar, and he/she is perfectly normal today.”

I’m beginning to get to a place where words like this cause me to cringe a little less. After all, unless you’re walking in our shoes and facing this challenge yourself, you truly do not know.

My husband and I don’t have a lot of support. Our own parents help in every way possible, but they’re going through health issues and caring for their own elderly parents. Friends have come and gone, as happens throughout life. Years ago, when we lost our daughter to a congenital heart defect (CHD), we had tons of support.

I’ve pondered this over the last few months, and I think I know the reason. First of all, we’re much older now, and most of our friends are just living life. I’ve noticed people get more busy with each passing day. No one has time to do much of anything other than go through the motions of life. I understand, trust me.

Although my path is far different than the paths of others, I know what it means to be overwhelmed with work, kids and just life. Don’t get me wrong, I think there are tons of people who perhaps could help and just don’t know how. I get it. The same applied years ago with our daughter. We knew no one could care for her the way we could.

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Unless you live with autism, day in and day out, you will not know. Even some of our closest friends think life is pretty easy for us and fail to see that we keep things easy for Drake. Yes, he’s an easy-going, sweet little guy, but we have worked so hard and sheltered him to help him feel secure.

I believe this has helped foster a wonderful little personality. But we can’t just pack up our clothes, hire a babysitter and go off on a weekend getaway. People aren’t willing to give up part of their busy lives to learn how to live our life. I don’t blame them. No one has time to do that.

It’s hard enough to live my own life, much less learn how to walk in another set of shoes.

But then there are complete strangers who just take it upon themselves to help. I’m in awe of these people. I want to be these people. I believe strangers show up because God told them to.

A few weeks ago a women’s Christian conference, sponsored by a local church, came to our area. This conference has happened for a few years in our small town, and I’ve always heard wonderful things. A month or so before the big day, a few people suggested I attend.

One of the speakers was a comedian named Kelly Ingram. Kelly has a son with autism and chooses to laugh at the life God gave her. She is quite an inspiration. People who suggested I attend wanted me to hear her speak. I was grateful people were thinking of me, and I had no doubt the conference would be amazing, but I was reserved to attend. Drake has therapy every single day of the week. The weekend is the only time we can just chill and not have the demands of life weigh on us.

I didn’t feel particularly motivated to attend and no one was pushing the issue. Until Laura*.

A few days before the conference I received a Facebook message from a stranger named Laura. I’ve edited some of the text to shorten the conversation and changed the stranger’s name for her privacy”

I read your blog, and I really would like for you to meet one of the speakers, Kelly Ingram, at the WOW conference. Her son is autistic, and she is an amazing Christian woman. May I bring you a ticket and you can come and go as your schedule permits? My daughter attends CCMS [This is the school where I teach]. Your blog really touched me.

I had to Facebook-stalk sweet Laura. I looked through a few of her pictures and recognized her daughter. I’ve never taught her child, but I did recognize her. I was intrigued. Why would this woman do this? I think this was the first time I realized people actually get our situation, even if I don’t think they notice.

People are reading what I write. Laura helped me to see people care and some will go to great lengths to let you know they understand your journey. This stranger stepped off the highway of life and walked down this bumpy, rocky, uncertain path with me for just a moment.

It meant everything to me.

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I met sweet Laura in person and wasn’t able to put into words what I was feeling during our brief encounter. I hope my words here will show her I believe God used her in an amazing way.

The conference was wonderful and everything I needed it to be on many levels. This stranger didn’t just utter words of encouragement, but she put her thoughts and feelings into action. Laura put her life aside for just a moment to touch my life. I believe she listened when God told her to reach out. Thank you for showing me incredible love, Laura.

May we all be a Laura.

A version of this post originally appeared on Walking With Drake.

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When a Mom Noticed How My Grandson Was Being Treated at a Birthday Party

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My grandson is on the autism spectrum.

He has challenges, but we are trying — he is trying — to find our way through.

He couldn’t stand the sound of water running and a toilet flushing since birth. He couldn’t stand the sound of a vacuum, hair dryer, any fans or too many voices. He couldn’t stand on the grass without freezing or enjoy the feeling of sand on his feet or hands, but we had to try to help him.

He had been using his “heavenphones” (headphones) at home when we vacuumed, ran a bath, flushed the toilet, etc. So, I got permission to have him bring them to school. It was awesome.

He could could interact with the other kids, he could listen to the teacher and this, with his breathing exercises (three deep breaths in though the mouth and out through the nose), appeared to make a huge difference. Wearing his “heavenphones” was entirely up to him. He would take them off and put them on as he felt he needed them. Keep in mind at this point he was barely 4 years old.

We noticed he still had the hardest time just after snack. He is allergic to peanuts and had “safety snacks” at school. If the snack had any chance of having peanuts, he would eat the snack from home instead. I had noticed at home he had trouble after having sugar. All kids get a little amped, right? So, we decided to drastically reduce the amount of sugar in his diet. It was like night and day. His teacher had mentioned her son had trouble with red dyes, so we took those out as well and he did great! So, from that time on, he brought his snacks to school.

But it made him “different.” I have many pictures of him at preschool where everyone else had juice boxes, cookies or cake and he had Goldfish and water. No one invited the kid who couldn’t eat cake to a their birthday party.

Between his second year of preschool and Kindergarten, he was invited to a birthday party for a little boy whose mom was a teacher at the school and knew him. It was at this party that something happened that blew us away.

My daughter had contacted the mom of the little boy and accepted the invitation. She told her she would send him with bottled water and sugar-free cookies so he would share in the snack time, and she brought enough for him to share. At this point, he was only wearing his “heavenphones” for maybe 25 percent of his time in school and many days, he didn’t wear them at all.

The party was at a place called “My Gym.” My daughter brought the snacks and his “heavenphones” with them, and off he went to play. About 10 minutes later, he came and got his “heavenphones” and a drink of water and returned to playing. My daughter could see she was getting some looks from the other parents. There had been soda provided for the kids but he was drinking water. And wearing headphones.

He played for about another 15 minutes, came back and got another drink of water and took off his “heavenphones.” It was at this point one of the moms decided to confront my daughter.

It started with one mom and turned into a group discussion. My daughter explained he had problems with noises and wasn’t able to “deal” with sugar. She explained that he disliked the feeling of being out of control and the way sugar affected him. He, at 4 years old, would ask you when you gave him something how many grams of sugar it contained. He had decided that 3 grams was his limit. He decided, not us.

It was decided by the “mom mob” that my daughter was being mean by not allowing him to share in the birthday cake, candy and pop. It was decided that she was making him odd, making him stand out, embarrassing him. They decided that she should let him eat sugar on special occasions such as this.

When it was time for cake and presents, the birthday boy’s mom skipped the cake for him, and he had his water and cookies. He even shared with the other kids. One of the “mom mob” walked over and gave him a can of pop. Before my daughter could say a word, my grandson gave it back to her and said, “No thank you.”

She tried to give it to him again and again, but he refused. As everyone was leaving the party, gift bags were given out at the door. One of the moms gave him the gift bag and he looked inside and gave it back to her. He told her, “No thank you, that is too much sugar for me,” and proceeded to leave.

The mom stood in the door and insisted he take it. My daughter was about to come unglued when he quietly took the bag, handed it to her and said “Here mommy, you know what to do with this.” And they left.

The mother of the birthday boy was totally unaware of all of this, but, another mom, who also knew my grandson, was aware. Several months later, he was invited to that little boy’s birthday party, where water was supplied for him, the gift bags had no candy and the cake was sent home in dixie cups. She told my daughter she was sorry she hadn’t supported her at the previous birthday party, but my daughter and grandson had both done such a good job, she had just let it go. She knew he would be invited to her son’s birthday and it wouldn’t be repeated. None of the children whose parents had been rude to them were invited.

My grandson is in kindergarten now. He is 6 years old. I found his “heavenphones” the other day under a bunch of toys. He doesn’t use them anymore. He loves the feeling of fans on his face, he rolls in the grass. He loves the beach and digging in the sand. He still does his breathing, and his kindergarten teacher has a “secret signal” to remind him when he needs to. We, and it is a group effort, have goals we are working on.

He brings home a colored slip of paper with a bear or bunny that says, “Great Day Today!” and we hang it on the wall for everyone to see. I love to see his face when he gets off the bus and knows he has one to hang. If he doesn’t, we discuss why it happened and what he can do to have a better day tomorrow.

Boy holding "Great job today!" sign in a classroom

He still doesn’t eat much sugar but he now accepts the cupcake or cookie and brings it home to split with his little sister (half the sugar, Nana!). If he starts to feel edgy or jittery, he goes and gets some string cheese or something with protein to counteract it.

He may always have challenges, but that’s not the end of the world.

He is a wonderful, energetic, beautiful little boy who has found Legos. He can sit for hours and create new things. He can follow step by step to make things that are thousands of pieces. He reads and does math on a second grade level and frankly, there is nothing wrong with him. He is my grandson, and I wouldn’t want him to be anyone else. He just came home from school and guess what? Yup, he got a purple bunny today!

Nice job.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

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To the Uncommonly Kind Strangers Who Helped Me Become an Autism Advocate

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I was diagnosed with autism as a college senior. Until that point, I knew the world and I were often incompatible, but I had little insight about myself. I had a lot of frustration and no understanding as to why so many things ended in a fallout.

When I met Leigh during band camp, she recognized a girl who needed a friend. She also immediately saw that I didn’t seem to fit in. I was extremely sensitive to sounds and other things going on around me, and I just didn’t quite mesh in groups. A few weeks into our friendship, she mentioned autism, and as an education major (with a stereotypical autistic memory!), I was familiar with the diagnostic criteria. Yet, I wasn’t familiar enough with myself to see those traits in me. A few months later, I was evaluated and diagnosed.

There are seemingly endless reasons why my family and I wish I’d been diagnosed much earlier. The one positive thing about my late diagnosis was that Leigh was the one to pick up on it and start me off on the right foot — or, well, ideology. Right away, as a psychology major who had no background in autism, Leigh was absolutely sure there was nothing wrong with me, that I had a right to live and interact and enjoy things in my own way. She believed the solution to my mismatch with society was not to force my square-peg self into round holes. Instead, she helped me make a square hole drill (she did most of the work), and we set out to start making a place for me.

Now that I look back, it blows my mind that she got to that place completely on her own, and it wasn’t so much “getting there” as it was intuition for her. The story thus far is in itself a story about a stranger who did something kind. You know, um, changing the course of my entire life, bringing me directly to my passion and purpose in this world and sticking by a super-quirky girl who, at that time, did a lot of melting and shutting down and then spending the night on her love seat in the dorm room. I was lonely in my single room. It had never been a choice; I didn’t have a friend to room with at the time.

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But that’s not the story I set out to tell (though it’s a story worth shouting from the rooftops, don’t you think?).  Leigh and I set out with the square-hole drill, and it wasn’t long before we realized every person deserves to fit in to the world around us. No more yours than mine nor his than hers. We did an autism awareness campaign on our small campus. We hand-made ribbons, hot glued them to pins and attached them to sheets of paper with a message about autism. We made about a thousand, which was nearly half our student body, and we stuck them into random mailboxes.

In June of 2009, six months post-diagnosis, I started a blog at Autistic Speaks, which is still active. I was gaining a foothold in advocacy efforts until my health took a severe downturn in January of 2012. I had no idea what was ahead of me. At this point, I have a diagnosis of mitochondrial disease; I have a feeding tube, central line in my chest that goes to my heart, an ostomy since my colon was removed and an insulin pump. I spent 15 months in a nursing home, and though I’m on my own again, I never know what a day will bring. I might sleep for 24 hours, or I might wake up with a migraine that hangs around for six weeks, or I might suddenly be septic and have to call 911. All real-life examples.

As things got harder with my health, I completely pulled back from advocacy. That was the wrong thing to do.  It made my world too small. It made it all about me, and my focus became my pain. I still do focus on the medical stuff, but it’s been a lifelong special interest, for Pete’s sake, and understanding what my body is doing (as best as medical science can possibly understand my body) calms my fears. That’s one of those square holes — it works for me, and that’s all that matters.

A long-time reader of my blog, Chloe Rothschild, reached out to me in the summer of 2012.  She had an awful experience at the hands of people she should have been able to trust, people who said they understood autism. She emailed me a few weeks after that, which was incredibly brave. She was scared, but even then, she knew the way to get un-scared was to take that experience and make something good of it. She wanted to advocate so other people never have to be so misunderstood. Chloe worked hard, as she still does today, and by the summer of 2013, she had the chance to speak at a national conference which happened to be in my city. Still in mopey mode, I dragged myself down there, only because I absolutely had to meet one of my best friends for the first time. Maybe it was all a sneaky ploy, but in the one day I spent there, I got hooked on the idea of speaking like that. But mostly, I saw the community of advocates and the friendship within their group as well as the power they had to change things on a large scale.

I have my feet firmly planted in the advocacy world again, writing, speaking and even working at an autism nonprofit in the community which has become my second family. I’m so proud of the work I do there, designing the website and emails, but most of all I love to talk with the families, helping the parents see how incredible their kids are and making sure they kids don’t forget it. I absolutely love conferences, big ones like the one where Chloe and I met, but my declining health means that airplanes are out of the question, as are long car rides. The one event that is reasonable for me to attend, OCALICON, takes place each November in Columbus, Ohio. It’s a chance to speak at the highest level, a chance to make professional connections and a chance to reunite with my community of autistic advocates.

It turns out that living in a nursing home and receiving all of $28 a month makes it hard to afford even a four-day trip just three hours away. In the spring, I added up the costs and realized it would never happen. I realized I would need help if it were going to happen. I went back and forth dozens of times on taking the advice of friends and setting up a fundraiser. Conferences are not exactly necessary to sustain life, and I’m always mindful of people in much more critical situations. I ultimately set it up, thinking that family and close friends may donate a few dollars here and there. Every bit would help.

I got a few donations of that sort fairly quickly and felt such gratitude, excitedly thanking the donors. As I wrote to them, I realized that even though I was in a nursing home, I did a lot of work every single day. Not a day went by that I wasn’t writing, studying and researching (I did the first year of my Master’s from the nursing home, which I’ve now completed). I had a hospital bed and a tray table and a laptop, my key to the world. I could have watched movies or played video games, but I worked incessantly, after surgeries and ER trips, and I worked on my thesis from the critical care unit. It might be a little backwards in terms of economics, but I did all of that without compensation, so I reasoned to myself that this fundraiser was the return on all the good I’d been doing without pay for the last year.

As the first night of my fundraiser closed, I was thrilled to have some coins rattling in the pot. I had six months until the conference, and any little bit helped. I woke up the next morning to an email that I’d had a donation during the night. I went over to the site…

The fundraiser was complete. A complete stranger had plopped several hundred dollars into my lap.

After verifying that it was real and trying to figure out what on earth had just happened — well, it turned out that autistic community is what happened. Somehow, and I don’t know how, a gentleman who lived many states away came across my fundraiser. I wrote to him, and it turned out he is on the spectrum. He said he’d been in my place some years ago and was grateful when someone helped him, so he wanted to do the same. “Go and do good things,” he said. It was almost like it was the only thing that made sense to him, that to walk away from a need he could fill without doing so was inherently senseless, which, oddly, made me stop and think that his uncommon response makes a lot more sense to me than the the usual human reaction of “someone else will take care of that need.” We’re still connected, and I was thrilled to be able to tell him about the event afterward. I got to speak on a panel, and I also had the privilege of speaking as part of a panel of some of the mentors and friends I respect most, including Chloe, on the main stage, under the lights. He was glad to hear and shared my post with his wife and kids, but there was no self-congratulatory fanfare at all, it was like he’d handed me a dollar for a water bottle. There was no sense of filled obligation. He was glad something he had to do had at least done something good. It’s simple, not in a way that makes it unimportant, but in a way that suggests it’s something that should happen far more than it does.

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Of course I hope someday I can pay it forward, but money isn’t likely to be a thing I have in much quantity. But that one good deed, granted, one huge, incredibly selfless and kind good deed, follows me every day. I look for opportunities to do good, whether with my writing, my time or situations in which the $5 in my pocket does more good for someone else than it would for me. When a kid picks out a cookie and Dad realizes he only has a credit card, which the bakery doesn’t take, I’m confident in saying that my dollars are better spent there than on a donut for me. It’s not that I was a curmudgeon before, but being the recipient of an uncommonly kind action gives me the confidence to be kind in ways that others might find a little oddly generous.

But I’m a square peg. I’ll always be a square peg. I’m immensely proud to be part of a community of square pegs who do things like Leigh did when she reached out to a lonely me and helped me find my crowd, like Chloe did when she took a chance and became a best friend, like the mentors who spend their lives making things better for the next generation, and like the stranger who made it possible for me to keep advocating (and to take the one chance each year I have to be together with my autistic friends). I’ve found my people, and when I’m with them, I can leave my special square-hole drill at home.

I still take it everywhere I go, though, just in case I find a chance to be uncommonly kind. If I’m going to be weird, and I don’t have much control over that, this is precisely the kind of weird I want to be.

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I'm Not a Perfect Parent. He's Not a Perfect Kid.

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I’m not a perfect parent.

Sometimes I’m tired. Sometimes I’m hurt. Sometimes I’m so mentally exhausted I can’t think straight. Sometimes I’m stressed beyond belief. Sometimes I don’t do things right for my son, Kreed, or I yell too much or don’t take the time to understand.

I’m not a perfect parent.

The trick is knowing that no one is. We try, and we do our best for Kreed, but sometimes our best is not super awesome. Sometimes our best is sheer exhaustion.

Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He’s not a perfect kid, either. But we love him unconditionally — to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help.

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We’d like to think we can be there 100 percent for our kids every second of every day. Sometimes we’re just tired parents. Who wouldn’t be after waking up every two hours at night to put their child back to bed? Who wouldn’t be after cleaning up another mess left for us while we shut our eyes for just. a. second.

That’s they way it goes. Like I said, our kids aren’t perfect either. Some days the world is too much, and it’s so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn’t understand that’s not OK. He’s hungry, and he wants their fries, damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on.

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Sometimes life feels like a repeat. Sometimes nothing changes, and it’s a struggle to get through. Other days are amazing. Some days are both. I’m not a perfect parent, and he’s not a perfect kid. So that’s how that goes.

But as long as we keep progress in mind — not perfection — I think we’ll be all right. Last year we were at the end of eight months of pure hell. He raged and hurt himself and me badly day after day. He was restrained constantly to keep him from destroying his body or the house or me.  I think I went to a part of myself and my brain that kept the full weight of those eight months far from my consciousness. Now I can barely recall it, and I guess don’t want to. It’s a year later, and there’s much to celebrate.

This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up, and you hardly remember what a good day looks like. But it will come. It will be a smile, a nod, a moment of wonderful — something — and the world will be OK for that time — five seconds, five minutes, five hours. That’s what we hold on to.

And remember it’s OK. We’re not perfect. We try our hardest, and we love, love, love. And often that’s what saves us all.

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.

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