When People Ask 'How Do You Do It?' About Parenting a Child With Autism

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“Brian, in five minutes we’re going to start getting ready to go to Corbin’s school to see his project.”

My request is met with crying. Transitioning out of the house lately has been rough. The typical transitions, like going to school, are no big deal. But anything that doesn’t happen on a regular basis immediately sets our son into panic mode, regardless of how much prep work we do before the transition.

I set the timer, and pull up a picture of the school on my phone to show him.

“Corbin is showing his Albert Einstein project at the Academic Fair. We have to go support him.”

He yells at me a little louder.

I wait until the timer goes off, and he slams the laptop closed.

He has tears coming down his cheeks, and he’s flapping his hands with anger.

I pull him into my lap and rock him. I whisper to him, “You are safe. It’s OK. You are loved. You are safe.”

He leans back and yells louder and hits his cheeks again. I admit I wince a little as the hands reach out, worried that I might also get a hit. But I don’t. He’s still in control enough that he’s not at that point.

I stand up, and his legs are wrapped around my waist. I stumble across the room to grab his favorite essential oil blend. I ask him if he wants his oils. “Yeah. Oils,” he responds between sobs.

I lay him back on the couch and give him a foot massage while applying the oils. I practice deep breathing, and I hear him trying to as well.

My husband and I exchange that look. We’re both thinking it. We’re not saying it out loud. Should one of us stay home with him? But no, we won’t. We have to give it a go. We have to support our oldest son and his hard work. We’re a family, and we have to do these things together. We have to help Brian be able to handle these outings.

I stand up and he cries a little and reaches out for me and again wraps his body around me.

We walk around the house like that. With me bent backwards a little to handle the weight, I point to the items we need for our outing with my husband following to collect them all: his talker, noise-cancelling headphones, a favorite animal, my cough drops and my phone.

We stumble out to the car, and I place him in his booster seat. His cheeks are still tear-streaked, but he buckles himself in a bit more quietly.

I’ve been fighting a cold, and I cough the entire car ride to the school. By the time we arrive, our breathing both seem to be regulated.

My husband meets us in the school parking lot. Like any outing that we are unsure of, we bring two vehicles. We have to be prepared that someone might have to leave early. Brian is at my feet with his hands up to me, “Up, up,” he pleads. Knowing I can’t carry him anymore without another coughing fit, I tell him no.

My husband offers a ride, but unfortunately in moments like this, Brian refuses him and walks on my feet with his head tucked into my stomach, trying to be as close to me as he possibly can. We walk into the school with this awkward gait.

Then we enter the school, he finds his brother and an inner switch clicks on. And he is OK with this transition.

And we hang out at a very crowded, busy, noisy environment for an hour and a half with just an amazing sweet, happy boy with autism.

The question I get the most from strangers, from people I’ve known for decades, from curious people and from well-meaning people is, “How do you do it?”

I often respond, “How do I not do it?”

But this is how we do it. We meet the challenge with a plan, with patience, with calmness, with compassion, with empathy and with love.

This is our life. This is our boy. Our amazing, beautiful, perfect child that has been handed challenges that we can’t fully understand because we don’t have the same challenges. A boy who doesn’t have a choice in how his body and his mind and his disorders react to simple transitions and input in his life.

So we meet him where he is and we love him where he is. We offer a hand to help him jump each hurdle as we meet it, and that’s how we do it.

How could we not do it?

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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The Best Kind of Relationship When You Have Autism

Hey guys, Andrew Levin here with a new video talking about the best kind of relationship you can have when you have autism.

If you have any ideas for videos you’d like to see e-mail me at [email protected]

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To Robert De Niro, From Someone on the Autism Spectrum

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Dear Robert De Niro,

As someone on the autism spectrum myself, I want to thank you. In fact, my appreciation has nothing to do with the film.

I was not diagnosed until I was about 15 years old (I’m 26 years old now). Those first 15 years were a long battle full of misunderstandings and meltdowns. It seemed like everything I did was wrong, and I didn’t know why. When I finally received the diagnosis, people began to understand me more. And although I still have many challenging moments, things have become easier over time.

I cannot understand what it is like to have a child on the spectrum because I do not have a child on the spectrum. Nor can I speak for anyone else other than myself. However, I can say that I wish I had received my diagnosis sooner. I wish people had known. I feel it would have reduced the amount of stress and anxiety I had from the lack of understanding.

Since I was diagnosed, I have become a major advocate. I try to spread awareness as much as I can. I try to focus on the things I’m capable of and spread hope. There are still times when it’s difficult and I get frustrated and just want to say “I can’t do that.” But we all have these bad days – some more than others.

In the end, I just want people to know. I want them not to be mad at me when I need to take a break after only a few hours of work. I want them to realize I’m not overreacting to the firetruck going by, but that the siren really hurts my ears. I’d like them to give me a moment to process what they’ve said in a conversation so I don’t misinterpret it. In the end, I really just want people to be more autism aware.

This is why I want to thank you for being a voice in the autism community. Thank you for spreading awareness, simply by stating that you know someone on the spectrum. Thank you for helping everyone to become more aware.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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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Robert De Niro Removes Anti-Vaccine Documentary From the Tribeca Film Festival

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Robert De Niro made headlines earlier this week when it was announced that anti-vaccine documentary “Vaxxed: From Cover-Up to Catastrophe,” was slated for an April 24 showing at the Tribeca Film Festival. After generating a great deal of criticism, it was announced on Saturday that the documentary was removed from the festival lineup.

De Niro, who co-founded the festival in 2002, released the following statement about the decision:

My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for. The Festival doesn’t seek to avoid or shy away from controversy. However, we have concerns with certain things in this film that we feel prevent us from presenting it in the Festival program. We have decided to remove it from our schedule.”

A day earlier, he’d responded to criticism over the documentary’s inclusion in the festival, saying:

In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However, this is very personal to me and my family and I want there to be a discussion, which is why we will be screening ‘Vaxxed.’ I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

“Vaxxed” is directed by Andrew Wakefield, the former doctor behind a 1998 study published in the medical journal the Lancet that claimed to find links between autism and the MMR vaccine (measles, mumps and rubella). The study was retracted by the Lancet in 2010. Wakefield lost his medical license the same year.

Lead photo source: Thinkstock Images

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When Advocating Becomes Bullying in the Autism Community

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As someone on the autism spectrum, I definitely consider myself to be a major self-advocate. I truly love sharing my experiences. My hope is that others can take what I’ve been through and apply it in a way that may help someone else on the spectrum.

Sometimes it can be difficult to be an advocate. I need to remember that I’m not the only one with an opinion. I need to remember to be respectful, even if I disagree. But I’ve been seeing another issue lately. That issue is when I see others — both on and off the spectrum — attacking each other and complaining about the things they don’t like. I don’t just mean disagreeing. What I’m seeing is almost bullying.

As World Autism Awareness Day draws near, I have seen multiple strong-worded posts about how people who aren’t on the spectrum should and shouldn’t act. And they were posted in a support group for people who aren’t on the spectrum. I saw other posts bashing people simply for trying to show support to an organization of their choice.

I see a lot of people complain about the way others spread awareness (and I will be the first to admit that I’ve been guilty of this at times, too!). But I think there comes a point where the autism community needs to stop criticizing the way others advocate, and start to just ignore those actions if they really dislike them that much. Instead, just advocate the way you would like to. Stop telling others what not to like, and spread the love of what you would like to see instead.

Let’s be happy for others, instead of taking positive stories and turning them into something to be unhappy about. Advocating shouldn’t be about tearing down the people who you disagree with. It should be about supporting others who you appreciate and lifting them up.

I’m going to try to remember to do this more often. It’s tough at times, but I am tired of the hate. There’s a fine line between taking a stand and being negative or even downright rude or mean.

April is Autism Awareness Month. Let’s remember to be kind to one another when we spread autism awareness, acceptance and understanding.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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When You Ask a Child on the Autism Spectrum to Stop What He or She Is Doing

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I like to try to explain things by using bodily functions as examples. Because often with people on the spectrum, some of the things we do seem less important to others. But for us, it’s a need, not a want.

Imagine you really had to go to the bathroom, and you finally get to go, but then someone makes you stop and go with them to the grocery store instead. Or go eat lunch. Or say it’s time to do dishes.

That would seem like a form of punishment or torture, right? Not only would it make you upset, but it would make you feel incredibly uncomfortable. The whole time you’re supposed to be doing this other activity, and all you’re going to think about in the back of your mind is going back to the bathroom and finishing your business. You might even plead with the person who made you stop!

“Please!? I’m almost done. Just a few more minutes. I’ll be quick. I’ll come right back and go with you…”

Now imagine a little kid, one who hasn’t had as much practice with social cues or “appropriateness,” or who needs a little more help in areas you might do quite well in (after all, adults have had more practice). Imagine that he’s watching cartoons (or playing with Legos, or whatever), and you need to leave to run an errand or it’s time for dinner, etc.

You tell him it’s time to go. To stop what he’s doing and come with you. To some on the spectrum, that can be a really hard thing to do. Their brains and their bodies might be telling them it’s not time yet. They’re in the middle of something. They can’t leave yet, they’re not finished.

So you get a little more stern: “I said let’s go!”

It registers that they’re going to have to leave before they’re finished. So they get angry or upset or start crying. Maybe they plead with you: “Please! Just a little bit longer! It’s not over yet! I’m not done!”

To you, this may seem like defiance (and hey, I don’t know your kid — maybe it is), but more than likely it’s because they didn’t have enough time to prepare for what was going to happen. They didn’t have time to finish what they started.

Which is why transitions are a big thing within the autism community — transition songs, transition actions or “warnings.” I know some people who use timers, and some who sing the clean-up song while they’re cleaning, then they’re able to use it as a warning. They can start singing it in the background while they’re playing to let them know what’s to come. 

It’s also one of the reasons routine can be such a big deal. With routine, they know what’s coming. They know they have enough time to finish their show, because every time it ends, that’s when we do whatever comes next.

So, the point I’m trying to make with this is — remember to try to be patient.

Nine times out of 10, they’re probably not trying to give you a hard time. They’re the ones having a hard time and communicating and expressing that stress or frustration in the only way they know how.

Instead of getting upset, try to find ways to help them through it.

At bedtime, we do the exact same thing every night. We never leave the house after that bedtime routine should be started. We never stay out longer than we should. Company isn’t allowed over when we start that routine (unless I know it’s not going to affect them specifically). Because their calm, happiness and understanding is important to me. And I don’t want to cause more stress and strain on them or me. Sure, it means we might not get to do some fun things, but until they understand better and can cope better, this is what we’ll do.

I suggest really paying attention. Are there situations that could be helped by making sure your kids (or grandkids or students) understand what’s coming next and better preparing them for it? So their heads and bodies aren’t shouting, “What are you doing? We’re not done! Don’t leave!”

Maybe wait until the credits are rolling to leave, or ask to help them finish their Lego masterpiece so they’ll come do the dishes.

Each kid is unique and may need something completely different than the next in order to succeed in life. And that’s totally OK. We just need to figure out what it is so we can help.

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.

Lead photo source: Thinkstock Images

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