10 Things I've Learned From Being a Special Needs Parent

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10. Keep your judge-y panties in check. I can’t tell you how many times my son, Timothy, and I have been victims of judgmental eyes. And until it happened to us, I had no idea how it felt. It sucks, people. Please don’t stare at my child when he is lying on the floor in Wal-Mart or flapping at the lunchmeat in the deli case at Zehrs.

9. Keep your parenting advice to yourself. For reals! Nine times out of 10 that mom and/or dad are doing the best damn job they can. They have taken hundreds of hours of “Parent Learning” courses. They spend every spare minute working with that kid. The wringer? They’ve been through it. It’s likely they’ve heard what you have to say already several times. It’s offensive, so please don’t. (I say this with love).

8. Live for the moment. Those dishes? They’re not going anywhere. Neither is the laundry. As long as you have clean underwear for the day, you’re good. A clean house will have to wait, ’cause my kid won’t. Let it go.

7. The meaning of ABA, IEP, IBI, TAC, OT, PT and the principal’s phone number by heart. (Insert eye roll here, please)

6. The short bus is awesome! It comes right to our drive way. Less work for me. Roll on, short bus, roll on. You rule.

5. Milestones are overrated and not made for every kid. Timothy still wears diapers and he is almost 7 years old. He just started to feed himself this year with a spoon. We had a party! Make up your own rules, and don’t conform to society’s. You’ll be so glad you did.

4. Learn to appreciate the little things. Peeing on the toilet warrants a trip to McDonald’s for fries around these parts. When my son said, “I love you” for the first time at 5 years old, I wept with joy and gratitude.

3. Respite care is awesome. We’re lucky enough to score 6.75 hours of one-on-one for Timothy each month. Yes, I love him, but having a shower alone is a gift from above!

2. Stop taking yourself so seriously. I live in sweats. I rarely have time to put on makeup, so brushed teeth and clean hair is what it is. If there’s time to sleep and clean the house, it’s a special day. I’ve lost friends along the way but made way more.

1. Don’t be afraid of different. Get to know different. You may be surprised at how incredibly awesome different is. I know I was.

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This post originally appeared on The Book of Timothy.

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‘Parenthood’ Show Creator Talks About Who Inspired Character With Autism

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On Thursday, Sept. 25, the sixth and final season of NBC’s “Parenthood” premiered. If you’re unfamiliar with the show, it follows an extended family — the Bravermans — through their ordinary but often challenging lives. The show’s been praised on all ends — its cast and script are excellent. But it’s also been notably lauded for accurately portraying a character with Asperger’s syndrome, an autism spectrum disorder.

Perfectly anaylyzing this is BuzzFeed’s Emily Orley, who — in her excellent feature — reveals that the character with Aspergers, Max Braverman (played by Max Burkholder), is based off the son of show creator, Jason Katims. He told BuzzFeed News:

I didn’t know that we could do it because there weren’t any shows or movies that told the story of a kid with Asperger’s. I was worried. Would everybody reject it? Like, This doesn’t relate to me. It’s depressing. Would it just be a point of people turning away from the show? And would we be able to do a good job telling the story, representing in some way what the experience is really like for a family dealing with this? And I didn’t know the answer to that.

Don’t miss the full BuzzFeed News feature here.

In its six seasons, the response to Katims and his team’s portrayal of autism has been largely positive. In 2010, Burkholder, who plays Max, told Disability Scoop that a girl with Asperger’s syndrome wrote him a letter applauding his performance. More recently, Psychology Today columnist and clinical psychologist, Mike Friedman, wrote:

By shining a light on the struggles of people with Aspergers and their families, ‘Parenthood’ continues to clear away the stigma of Aspergers so that more and more people understand the issue and root for people like Max… to lead full and healthy lives.

 

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We Didn't Listen to This Advice... and That Has Made All the Difference

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We heard it at every turn.

“She’ll be fine.” “What are you so worried about?” “My friend’s kid didn’t talk till he was 4.” “She seems normal to me.” “You’re being paranoid.” “Don’t worry; just give her time.”

But I knew. I knew Lila was different. She was our first child, and I still felt it was fairly evident from a very early age. Something wasn’t right. She had terrible colic from the beginning and would scream for hours and hours on end. She had GI issues and sleep problems as well.

The closer she got to 12 months old, the more evident it became. Lack of eye contact, lack of response to our voices — I honestly thought she was deaf. She was never a fan of people other than my husband, Bill, and me, and she was a mess if we strayed from our normal routine.

Along this journey we were accused of “creating the problem,” “self-diagnosing” and a myriad of other incredibly hurtful accusations.

mom and daughter smiling at each other with the text 'we didn't listen... and that has made all the difference' Through it all, Bill and I stuck to our guns, which was not easy to do. As a mother, nothing made me feel worse (and more “Münchausen-y”) than people insinuating that we were self-diagnosing — like we wanted something to be wrong with Lila. It absolutely killed me. It would have been so much easier to bury our heads in the sand and pretend nothing was wrong. Trust me, there were times we both desperately wanted to do that.

But Lila needed us, and we were determined to do every single thing in our power in order to find out if something was actually going on with her (and if it was) to confront it head-on as soon as possible. If we were wrong… great! No one wanted that to be true more than Bill and I did, trust me. If we were onto something — Lila needed our help.

After her initial assessment, Lila started therapy with SoonerStart when she was 15 months old. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when I couldn’t get to her. I was terrified that we’d lost her.

She was officially diagnosed with Autism Spectrum Disorder at 21 months old.

We still have a very long road ahead of us, but we have come such a long way in the past 11 months — and we are so beyond grateful. The little girl we have now is not the little girl we would have at this point had we not stayed true to ourselves, to Lila, and worked with her every single day.

Because we didn’t listen to everyone else, Lila’s future was forever altered — in a positive way. Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about early intervention and how important I feel it is. My only regret is that we didn’t know more and start earlier.

If you know in your gut there is something different going on with your child — please listen to that voice. Don’t give up, no matter what. It could very well mean all the difference for them and their future.

This post originally appeared on Dancing With Autism.

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6 Arguments for Using the 'R' Word... and 6 Reasons Those Arguments Make No Sense

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My older brother taught me two very smart lessons.

1. Never play kid music in your car. Unless you want to listen to Cailou‘s Greatest Hits for eternity. Your car, your music. Good advice, Big Bro. (That’s why my kiddo requests Queen and James Taylor when we drive.)

2. “The hill you die upon.” He was saying it in regards to a person we both knew who had started a Facebook scuffle. The topic? The “R” word. On my own personal profile page. One person just could not wrap his head around the idea that this might be offensive, demeaning and just plain hurtful, despite my own and others’ request to drop it. I will never forget talking about it later with my brother, and how he just summed it up perfectly. “That’s the hill he wanted to die upon? Really?”

In case you haven’t figured it out by now, autism is one of the hills I will do battle on. Spreading the word to end the word is another. Let’s just take a moment and explore the stages of a person who uses this word and is corrected for it. Most of the time it’s a case of they-just-didn’t-think-or-know-better. They usually make amends, and we all move on. But there are others who cannot take being told their speech is offensive. These are the arguments usually used:

1. Free speech protects you. Yes, it gives you the right to say it. It also gives me the right to react to it. It doesn’t protect you from hearing my retort because that’s also me using my right to free speech. Isn’t it marvelous how that works?

2. You’ve been asked to not use a word you used to say when you were on the playground as a 10-year-old. Haven’t you changed since then? You used to think New Kids on the Block was the best band ever. Still do? Didn’t think so. Perhaps it’s time to embrace that using the word “retard” or saying “that’s retarded” makes you sound about as outdated as an 8-track player.

3. You can’t understand why I get so worked up over this word. I can’t understand why you get so worked up over defending your right to it. Hear what I am about to say. You’re not offended until it affects you. Then you will be up in arms. So understand this is my up-in-arms moment and always will be. This is the hill I am willing to die upon. I have a son with autism so, of course, this is extremely personal to me. Look around, my friend; autism is everywhere. Closer to you than you might even be aware of, and I haven’t even touched on those with other disabilities. If you’re kind enough to hold a door for someone, why can’t you hold your tongue about a single word?

4. Oh, you want to bust out a dictionary and point out how this word is used in music? How right on the sheet music of a song you see it alerting the reader the song is to be played slowly? Yeah, are we really, at this moment talking about that? We’re not. You know it. I know it. You know when you hear someone use that argument of, “Oh why can’t I say the ‘N’ word cause rappers do?” You’re not Jay-Z. And no, I’m not a fan of that word either. When you defend your right to use the “R” word, that’s what you sound like to me. Just as ridiculous. You will never hear my son refer to another person who has any sort of intellectual disability by this term and mean it in some endearing/bonding way. Nope.

5. Oh, it’s a medical term! Yes, a completely outdated and no-longer-used one. If you see a doctor who still uses it, I urge you to find new medical care. Chances are they aren’t up on a lot of medical information either.

6. Things can be fire retardant. Why yes, they can be and thank goodness for such a technological advance. I am rather firmly against things catching fire. I am also against you pretending this argument is valid when you try to compare fire retardant-treated items and the phrase, “That’s retarded!” as the same. It’s not. One keeps kids’ pajamas from catching fire. The other is used to liken a human being to an object that no one wants or values.

It boils down to this. Be kind. Compassion is missing far too often in this world. You may say, “I didn’t mean your kiddo,” but here’s the thing. You referred to somebody’s kid. Another human being who has a family and friends. Likes and dislikes. Strengths and weaknesses. Something to offer this Earth we all live on. If you have not already, I urge you to take the pledge to end the word at http://www.r-word.org/.

We all have many battles to fight, but don’t let this be the hill you choose to die upon. Choose kindness. Choose empathy. Choose anything but this word.  Choose to have an open mind.

 This post originally appeared on Autism With a Side of Fries.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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A Letter to My Daughter About Her Brother's Disability

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Below is a letter I’ve written to my daughter. She’s the younger of our two kids. But I already see that in some situations, she takes the big sister role. I so badly want her to understand her brother’s autism. I know she notices that he gets more attention than she does… and I don’t think it will stop. Anyways, here it is.

Dear Lucy,

I’ve been thinking about writing this letter to you for about a year now. In that time, I’ve been noticing you noticing me… and it hasn’t always been positive. For the most part I think I’ve been doing a pretty good job as a parent and daddy. But I know I’m letting you down in a crucial area of your life, and I’m not sure that I can stop.

In the last couple of weeks, I’ve made you cry, and it breaks my heart because I know it will not be the last time I do so. I’ve ignored you, favored your brother, and I know it hurts your heart. I just want to let you know — I’m aware of this, and it hurts my heart too.

You’re the baby of our family, and as much as I want you to always be Daddy’s baby, I also want you to grow up quickly so you can gain a certain amount of understanding. I guess I want this for you so I don’t feel like I’m damaging you as much. You see, your older brother has autism, and I fear that it takes from you at times.

I started a nonprofit organization because of your brother, in hopes that we could help other families. It takes up a ton of my time. When you ask me to play while I’m working, I tell you, “No” way more than I tell you, “Yes.” I see that it breaks your heart. It breaks mine too.

The local news did a interview with me, and your brother was in it. You watched it and didn’t understand why you weren’t included. I didn’t have a good answer. I didn’t think you would understand. We shot a brand new “About Us” video, and you asked me, with tears in your eyes, “Why am I not in that video?” Once again, I didn’t have a good answer for you. You left the room, and then the tears hit my eyes.

Your brother has behavior therapy twice a week for two and a half hours a session and a socialization class once a week. You don’t understand why you don’t get to do these things. I try to explain it. I clearly don’t do a good job.

You’re developing at a rapid pace, and I’m in constant amazement at how easy you learn. It also serves as a constant reminder that your brother doesn’t have it this easy. I need to stop and celebrate you more. You deserve it.

You and your brother are playing on the same soccer team for the first time, and you’re holding your own with these older kids. Daddy is so proud of you! But, if I’m being honest, I catch myself watching your brother more than I watch you. And it’s not fair to you. I think it’s because I expect you to keep getting better. When I watch him, I’m hoping he gets better.

I’ve tried a couple of times to explain autism to you. I’m pretty sure you don’t fully understand. I’m not sure why I expect you to, when most people 10 times your age don’t get it. Someday you will… I just wish it was today.

Please know that Daddy is doing his best and also know that he wants to do better.

I love you way more than you know,

Dad

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A version of this post appeared on Firefighters vs. Autism.

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Autism Can Make Him Feel Angry, So He Found Something to Make Him Feel Free

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Sometimes, Kaner Flex feels like he’s in prison.

The 19-year-old professional dancer from London has autism, making social situations difficult for him. But through his art, he’s found a way to break free of any anger and connect with the world. In the video below, Flex brings the judges to tears in his mind-bending performance on “Got to Dance,” a televised British dance competition.

It’s hard for me to give you eye contact. I don’t really give eye contact,” Flex said, according to UnrealityTV. “Dancing helps; it makes me feel free.”

Take a look at his performance:

Flex made it to the semi-finals of the competition before being voted off, according to News Shopper. But the exposure has already opened up new career opportunities for him. On his Facebook page, for example, he recently posted a video of him performing with British pop star Rita Ora.

You can keep up with Flex on Instagram and Facebook.

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