Autism is Shining

Last week was hard, wasn’t it? There was so much ugly and sad and angry and heartbroken. It was a terrible week. Weeks will continue to be terrible for 27 families and those that loved them in Newtown. Like you, I have been trying to send my love to them and wishing them peace.

Yet during all of this, there has been a terrible undercurrent in the autism community. After Newtown, Asperger’s and autism hasn’t just been misunderstood, it has been vilified. People in the community are afraid. Parents are afraid that friends, family, classmates, teachers, and strangers will fear and hate their autistic children, just because they are autistic. Adults are afraid that neighbors, coworkers, friends, and employers will fear and hate them just because they are autistic. Allies are afraid that their efforts to share awareness and acceptance will be overshadowed by this very fear and hate.

There are examples of this already happening that have been circulating through the autism and autistic communities. When people with autism, their parents, and their allies just want to mourn Newtown with the rest of the country, we have been left having to defend ourselves instead.

This is why a few wonderful people, people I am lucky to call friends, have started Autism Shines. Hundreds of people have shared photos of themselves and their children to tell the world what autism really is. It is a page FULL of love. I have seen some of you and your kids there. Every photo I’ve seen has made me so very happy, which is a wonderful thing to be this week.

This is autism.

This is autism.

this is jack

This is autism.

Jack looked at his photo just now and asked me to put it on the internet. Then he asked me to print it out. We just went and taped the photo over his bed. He is proud of who he is. PROUD. He shines. I want him to grow up in a world where he can stay that way—and where other people see that shine too.

Thank you to the people behind Autism Shines. Thank you for putting that good into the world.

Strength, Respect and Autcom

Last Friday and Saturday I went to the Autism National Committee’s annual Autcom conference. It was one of those experiences that I can’t quite put words to, but that left me profoundly moved.

Me = mind, expanded.

You guys, I don’t know that I have ever been among people who were so universally accepting and respectful. The true diversity in that room was astonishing. The respect and strength of the presenters and attendees was incredible. Some of, maybe all of, these presenters—most on the spectrum themselves—have been through some shit. And there they were, standing in front of groups of people telling them to stand tall and keep walking.

It was a really…nourishing experience.

Ariane Zurcher was there and wrote about it, better than I will here.

I had met a lot of the people who were there. Many of them I’d never met, but I’ve read their words. Some of them I met for the first time. Some of them I quietly fan-girled at from across the room. A couple of them are people I consider actual, real-life friends. All of them were tremendous. I wasn’t very good at approaching people at this conference, but a lot of very nice people talked to me, which was great. Thank you to my old friends and new friends who were there. It was wonderful to be with you.

I was incredibly affected by Tracy Thresher and Larry Bissonnette, advocates and stars of Wretches & Jabberers. They typed as presenters at several panels as well as part of a Q&A session after a screening of their movie, which I hadn’t seen before.

Wretches & Jabberers Q&A

Harvey Lavoy, Tracy Thresher, Pascal Cheng & Larry Bissonnette at the Q&A about their movie.

Watching the two of them riff off of each other and the audience was phenomenal. I made sure to attend a presentation on facilitated communication that they led the next day. There were some kids in that presentation (who skate with Jack, actually) that use facilitated communication. Watching the affect that Tracy and Larry had on those kids is something I won’t forget.

I had lunch with them the next day, as well as with CJ and Laura-Sun from The Musical Autist and a very nice woman who was there as an aide for some attendees. What an incredible group. I spent some time talking/typing with Larry about his travels and his art. It was a really meaningful conversation for me.

I came home and ordered the movie and the soundtrack first thing. Everyone that comes to my house is going to be required to watch it. You won’t be sorry either. These guys have a really important message about presuming intelligence and understanding that not being able to talk verbally is not the same as not being able to communicate or not having anything to say.

I know this isn’t the most coherent post I’ve ever written. I think it is because my words aren’t ready. I’m still thinking over a lot of what I heard and saw at that conference. It will take me a while. It was profound. I can’t think of anyone—touched by autism or not—that couldn’t benefit from going to a conference like this. I especially can’t think of a parent of an autistic child that couldn’t benefit from going to a conference like this. It was eye-opening and soul-strengthening in a lot of ways.

Awesome

A lot of people have asked me how Jack is doing in his new school. I’m going to let him tell you.

We ran into Jack’s second grade teacher (and my friend) this afternoon after school. She asked him how school was. His response? An enthusiastic, “Awesome!”

Jack adored his teachers last year, but the work was really stressful for him. He told his therapist that school was “like a crash on the head”—or a bonk or something similar. I don’t think it really matters what sort of collision with his head he specified. It wasn’t good. Before school started this year, he told us that he was worried. He was worried that the work would be too hard. I was worried that he would be miserable, like he was last year. His reaction to school last year is the reason he has a therapist now.

He is in a class with a total of six kids and he is mainstreamed for a lot of the day. But the part of school that he has the hardest part with—reading, writing, inferences—that gets taken care of in his small classroom. He has kids he likes in the class. One of those kids lives only a few blocks away from us. His teacher is nice. His homework load isn’t too heavy. His bus schedule has worked out.

He thinks school is awesome.

He is happy.

Now, one of the things Jack’s prior school was really good at was pushing him academically, probably farther than I would have done on my own, and for the most part, it was good for him. I have to make sure that he remains challenged, because Jack has an awesome brain that needs to be engaged. Based on what I’ve seen, the teacher will likely be good at making sure he gets challenged the way he needs to be.

But, honestly, at this point, I don’t care. All I care about between now and parent-teacher conferences in November is that he is happy. That is my total goal. I want him to learn that school can be fun—or at least not like a head injury.

I think that might be happening.

Jack has been reading more lately. He’s read all of the Diary of a Wimpy Kid books a zillion times. This morning, Jack asked me to get him a notebook he could use as a diary, so I found one and had it waiting for him when he got home. During homework time, he ignored the math worksheet I kept trying to put in front of him and instead he started writing in his new diary.

He told me to pretend to drink my can of soda and look over the top of my computer at him. Which I did, in between sneaking photos of him.

Jack writing in his diary

He kept looking up to take note of what I looked like.

Do you know what was happening here? Last year, two or three times a week, Jack was supposed to read a book for a half hour and then write in a reading response journal. It was a nightmare. Forcing him to write something relevant and coherent after I’d forced him to read? It didn’t go well. At a certain point, I just stopped making him do it.

This year, Jack’s teacher asked if I wanted him to have to do a reading response, to which I vehemently shook my head no.

But look at that. That is a reading response. On his own terms. And, frankly, it is better than any of the paragraph-format reading responses he wrote last year. See?

Jack's diary

He told me I could look. I asked first, I promise. It is a diary after all.

I’m aware that this notebook probably won’t end up filled with a daily record of Jack’s life. But the way he merged his real life with what he was doing and with the bar graphs on his math worksheet and my soda and my tank top and, holy shit, that awesome picture of Alex?

I love that he could do that and that he wanted to do that.

At least for now, I feel that Jack is in the right place. He is happy. He is learning on his own terms.

And that is awesome.

*****

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Parenting (Autistic) Kids is Hard

“Be kind, for everyone you know is fighting a hard battle.”

Being a parent is hard. Really hard. When I say that, I don’t mean that I wish that I hadn’t had children or that I wish they were easier kids. I mean that raising other human beings that you love more than you love yourself is breathtakingly difficult.

Your child’s struggles—his anxiety, her aching desire to fit in, their stumbles and bumps as they travel their roads to become adults responsible for themselves—can be inspiring, heartbreaking, hilarious, scary, remarkable, stressful, unexpected, delightful, worrisome…add your descriptor here.

Sometimes it is many things at once.

It is impossible to know what it is like to be a parent until you are one.

Ever since I started blogging about my kids, which has been five and a half years now, I have consistently gotten emails, messages, tweets, personal hugs, and all other manner of communication thanking me for my honesty in writing about just how damn hard it is to raise kids. People tell me that they thought they were the only one. They tell me that they thought they were alone. They tell me how much it matters to them to know that they are not the only ones who are struggling.

Sharing that bond over the difficulty of parenting and acknowledging that it is so hard and even that sometimes our kids are assholes, well, that acts as a safety valve that releases pressure. Knowing that we are not in it alone, especially if the act of raising our children isolates us from each other, sometimes helps us make it through a heartbreakingly scary day until we can get to a delightful one.

Raising a child with autism or another disability often imposes even more isolation upon parents. In addition to the joys and problems that parents of typical kids face, we have a whole other set of hurdles (and, yes, a whole other set of joys as well). Yes, we get to experience the unique point of view that our special needs kids bring to life and we get the amazement every day of seeing what our beautiful autistic kids are capable of. I wouldn’t change the neurodiverse makeup of my family even if I could.

But we also face great challenges. We have to decide how best to help our children with their extra struggles in the face of confusing and conflicting information. We have to learn to advocate for our children, something that isn’t always easy, and is often extremely difficult. We have to help them navigate the social difficulties of the world, even if doing so is hard for us ourselves. Often we end up losing friends and family members because they don’t understand what we are going through, because our stresses are too much for them, because they want us to fix our children when all we want to do is accept and teach them. We lose the ability to socialize on the school playground because we have to keep track of our kids to keep them from “eloping” or having problems with other kids because of social difficulties. Some of us can’t leave our children alone ever, even in our own homes, and still count on them remaining safe. Most of us worry about making sure not only that we safely usher our kids to adulthood, but that we are prepared to keep them safe and cared for once they are adults and even once we are gone.

We aren’t underestimating our kids. We aren’t feeling sorry for ourselves. We believe in our children’s genius and their good and their capacity to learn and contribute and be happy. We are hoping for the best, but preparing for the worst. When you have a child, when you are a parent, that is what you do.

I’m not saying it is harder for us than it is for our kids. And I am not saying that people should pay attention to our needs more than those of autistic children and adults, but I am saying that our road is valid and important as well. I am saying that watching your child struggle in the way that autistic children do can break your heart. I am saying that parenting autistic children is hard.

This is not to say that I wish Jack—or any of my children—were different, were typical. This is not to say that I do not accept my child exactly as he is. This is not saying that I want pity or kudos for my parenting. This is only to say that parenting is sometimes hard.

Just as it helps parents of typical kids to hear that they are not alone, the same goes double for parents of autistic kids. When a struggling parent hears, “Yes. It’s hard,” “You’re not alone,” “This is what my family tried,” “It gets easier”? That can be life-saving.

I know a lot of parents of autistic kids and a lot of them feel like they can’t say publicly that it is hard to raise their children. They feel that if they break down and say that they wish they could have one easy day that they will be accused of not truly accepting and loving their own kids. Valid or not, they feel that they are criticized and judged whenever they say something negative about raising their children.

I know that there are are parents who don’t accept their children’s autism. I know that there are parents who want to “fix,” who want to cure. I know there are parents who do not speak respectfully about their children. However, most of the parents I know would fight lions with their bare hands for their children—exactly as they are. I know many, many parents who do accept their children as autistic—really, truly do—but who sometimes have days when they just can’t hack it. They know they will be able to pull it together tomorrow, but they need someone to tell them, “It’s okay. Yes, it’s hard. You’re not alone. You can do this.”

I believe that it is vital to hear autistic voices. I know that the number one thing that brought me to my place of acceptance and embrace of Jack and his autism soon after I first started learning about the spectrum was reading things written by autistic adults. Without question, I believe that their voices are the ones that we should follow. I know that just as you cannot know what it is like to parent an autistic child unless you parent an autistic child, you also cannot know what it is like to be autistic unless you are autistic.

Likewise, none of us can truly know anyone else’s experience. Your experience growing up autistic is not the same as my experience growing up autistic and neither of us had the same experience that Jack has growing up autistic. But we can all learn from each other, as long as we are willing to listen. I believe that conflict drives conversations forward and that dissenting opinions make everybody think harder.

But most parents really know their kids. And most parents really try hard. And most parents love and embrace their children for who they are. And even if everyone doesn’t, we can’t assume that just because someone says it is hard to parent their child that it means that they don’t accept everything about him. And just as it is vital to respect and amplify autistic voices, it is vital to let parents have hard days without judging them.

I know that autistic adults often feel disrespected by parents. I understand that, because I hear some things spoken by parents that bother me terribly (and vice versa), but many of us want nothing more than to respect both parents and autistic individuals. Sometimes we have to take a chance and lead with respect in hopes that we will be met with the same.

I have three beautiful children. They are amazing gifts to me. Some days, however, I want to sell them all to the highest bidder. When I write about feeling that way, I hope that I do it with humor and respect, and I also hope that some other parent out there reads it and is stronger for knowing that she is not alone.

Quinn, Sam, and Jack

They are everything to me. But sometimes “everything” is overwhelming.

*****

I tell my kids all the time to “lead by example.” Head over to White Knuckle Parenting to find out how I actually led my kids by example last weekend.

*****

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