Proud Little Mermaid

If any of you read my contribution to the Special Gifts anthology, you would know about our early experiences with swimming pools and Riley. The sensory bombardment of a locker room, a hot day, bright sun reflecting off the water, people splashing, the strong smell of chlorine, kids squealing, cold water, adult chatter. It was pure hell for Riley as an extremely sensory defensive toddler.

Throw a new baby into the mix, and us living in an area with no family what-so-ever for support and swimming was put on a back burner. Important, yes….but so many other things had to come first.

She’s taken private one-on-one lessons but it was a delicate thing. With her intense anxiety, if you pushed her too hard, you would never get her in the pool again. So, she’s eleven and still can’t swim.

We went for her second lesson this week with a new teacher. It is a different way to learn.

It almost reminds me of the floor time we did when she was little. The teacher rocks her like a little baby in the water. Riley looks completely blissed out. The point is to get her to enjoy and be soothed by the water. When you are tense, you can’t move your body effectively to swim. So by relaxing her, I mean REALLY relaxing…I swear her brain is being re-patterend.

As Riley walked over to the pool to meet her teacher Monday, Seth and I joined hands, closed our eyes and I led him on a gorgeous meditation, where we saw him and his sister on vacation somewhere beautiful, swimming freely, enjoying the water. We imagined Riley underwater like a little mermaid….pure joy.

After that we read a little from a Cricket Magazine someone had left on the table. The next time I looked up, I saw my daughter go underwater up to her goggles. Mouth and nose submerged.

WHAT?

I held my breath.

The next time I looked up, I saw my daughter go completely under water, remain there for a second, then come up smiling.

WHAT?

And then she did it again. And again. And again.

And I cried.

This was her second lesson. And no, she can’t swim yet. But she has overcome the most monumental hurdle, and it won’t be long.

Great, now I’m crying again.

Talk amongst yourselves.

 

Set Me As a Seal Upon Your Heart

Being an autism mom has drastically reduced my tolerance for disrespect.

Our old dentist, had this thing going on with his assistant. He treated her like she was not smart. She took it, meekly.

It made me squirm.

Then…one day, when I mentioned Riley, her Asperger’s and associated anxiety regarding dentists, he said,

“The problem with kids and anxiety at the dentist is 99% of the time, the parents.”

And we were done.

I’ve avoided the phone calls from his office, wanting me to make appointments for cleanings for over six months. I had not found a new dentist and didn’t want to end the relationship (in case one of us got a toothache in the meantime) until we found a new one.

Referred by a friend, I went to a new dentist this week. He inquired about why I left the old one. I hesitated, not wanting to be negative…but then thought it might be good information for him to have. Do not blame autism parents, for our childrens’ behavior. You have no idea how long and hard we have worked with our children to help them. No idea.

His reaction to what the last dentist said was stronger than I expected. You see….he has an 18 year old son with autism.

This is my new dentist’s boy. He is non-verbal but proficient at sign language. He is signing in front of a crowd of 900 at a school assembly. Check out his killer smile!

Besides being dentists, his parents run a website called www.autismtutors.com, which helps match children with autism and tutors who want to work specifically with that population. There is a vast amount of valuable info on various autism resources on the site.

The cool thing is, I don’t think my friend who recommended this dentist, even knew he had a kid on the spectrum.

I love it when The Universe winks at us like that.

Keri, Susan and Alex

One of the fun parts about going to LA recently was getting to meet two women I’ve been friends with on line but had never met in person. Keri Bowers, (left) and Susan Levy. They had not met yet in person either, so it was fun and made me feel a tiny bit cool to connect them…both being mothers to young men on the spectrum. It was wonderful for me to meet them, because both are autism-mom powerhouses. Their kids are older than mine, and I have so much to learn from them.

Keri is an artist and film director and wears many other hats. She co-directed the Films Normal People Scare Me with her son who has autism and The Sandwich Kid with her son who doesn’t have autism. I’ve interviewed her a couple of times on my blog and both on the blog and in private conversations she was so generous with her time and her vast knowledge base. In person, she was even more lovely. So real, so unpretentious. Very artsy, of course, but in a gracious, down to earth, honest way. I could have talked with her forever.

Susan Levy, was formerly the principal of a school for kids with special needs and now she runs something called The College Internship Program in Long Beach, which helps young adults with autism transition to independent living. She has the rare quality of being laid back, yet she’s also super efficient. In one day I witnessed her take an idea to have a picnic bringing together the entire LA autism community, and solidify it, and begin delegating, and believe me…it will happen…and soon. Susan is just full of good ideas and boundless energy, and also kindness. She picked me up at the hotel and carted me around for our evening of dinner and drinks. Such a nice person! The LA autism community is lucky to have her in their midst!

While going to the restaurant, Susan mentioned she’d asked someone to join us for drinks after dinner. His name was such and such, and he is a young adult with Asperger’s…and he was new to LA, and he runs a website, yada yada….the name was lost on me. I had too many details from my LA trip floating around in my head. Sure, sure, that will be nice.

After dinner we met up with Alex Plank and some of his buddies at a hotel formerly owned by John Wayne, in Culver City, Susan’s pick(very cool place..with a wonderful history of hosting the munchkins from The Wizard of Oz during filming of said movie). Alex was a riot. He was so smart, and funny. He had one ear in several conversations at once, and asked very direct questions, and had such an honest, genuinely curious way about him…he just totally charmed me.

When he found out I blogged he said,

“You should interview me!”

I was like, “Okay…”

And come to find out he is the founder of Wrong Planet, which according to him, (and I believe him) is the most trafficked autism website in the U.S.

I had to admit I wasn’t all that familiar with Wrong Planet. I sort of vaguely knew of it. To tell you the truth I think I clicked on the website a couple of years ago and was frightened off by the hostility in the comment section. I’m not saying those who have Asperger’s don’t have a right to feel how they feel, but whatever I read at the time was pretty ugly and I didn’t go back. Alex was nothing like that.

He wound up driving me back to the hotel, and we had a lovely conversation in the car. I found him to be delightful, and inspiring. Here’s this young man with Asperger’s, taking LA by storm…there two weeks and already being asked by an agent to be a character actor in this or that. I loved it!

Yes, I’ve sent him my list of interview questions…and will get back to you if/when he gets back to me.

So anyway…LA. It’s not just for Revelations Conferences. It’s for meeting other wonderful people, all affected by and connected by autism. Back at the hotel that night, I felt so lucky to have had the experience of meeting these three.

Thank you Keri. Thank you Susan. Thank you Alex. You all are awesome.

It was a blast.

Tiny Chat

My Photo

Some of you who read this blog are no doubt familiar with Lydia of the wonderful Autistic Speaks blog. Lydia is great at instant message, but sometimes becomes overwhelmed in real life conversation. IM is a wonderful way for her to communicate with others and for others to learn more about her. If you love IM and would like to chat with Lydia do consider joining her new tiny chat group. She’s a good egg.

Parents….you are enough.

While in LA, I met up with some friends, (more on them in a later post) who mentioned Elaine Hall of The Miracle Project. I was familiar with Hall because I’d done a review on Autism the Musical for Age of Autism a couple of years back. It is a wonderful documentary. So she was on my mind when I got home, and I googled her, and up pops her blog with this gorgeous message: “Dayenu.”

For Hall’s full post on this video click here.

Take a breath.

Then another.

We are all enough.

Love.

Autism on PBS

Subject: PBS Press Release: Autism Today

Importance: High
Robert MacNeil returns to PBS NEWSHOUR to report on Autism Today
6-part series airs during Autism Awareness Month
April 18 – 26, 2011
ARLINGTON, VA (March 29, 2011) – Autism – it’s a developmental disorder that has become increasingly prevalent, affecting 1 out of 110 American children. Despite years of study, little is known about its cause and access to treatment varies. Meanwhile, hundreds of thousands of American families hungry for answers struggle to care for the unique needs of children with the disorder. Among them, Robert MacNeil, co-founder of the PBS NewsHour and grandfather of Nick, a 6-year old boy with autism.
“I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story … until Nick,” MacNeil said, “because he moves me deeply.”
MacNeil and producer Caren Zucker tell the story of Autism Today in a 6-part broadcast series beginning Monday, April 18, 2011 and a robust online component where viewers can join the conversation. Ms. Zucker has produced many stories on autism and is the mother of a 16-year old son with autism.
Monday, April 18 An introduction to Nick and autism as a whole body experience: MacNeil brings viewers along on a visit with his daughter and grandson Nick in Cambridge, Massachusetts, to see how autism affects the whole family, including his 10-year-old sister, Neely. Nick experiences autism not just as a disorder in brain development but also as physical ailments affecting the whole body.
Tuesday, April 19 Autism Prevalence: Why are the numbers of children with autism increasing? At the UC Davis MIND Institute in Sacramento, California, MacNeil sees the wide range of different behaviors that comprise the autism spectrum. Anthropologist Richard Grinker argues that the rising numbers of children with autism is explained because conditions previously given other names, like mental retardation, are now included in the autism spectrum. Scientist Irva Hertz-Picciotto says the wider definition only partly explains the increased prevalence, pointing instead to a variety of environmental factors.
Wednesday, April 20 Autism Causes: The rise in autism numbers has caused a surge in research to find the causes. For the latest thinking, Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University.
Thursday, April 21 Autism Treatment: Although children with autism see doctors periodically, they go to school everyday. It is the school system that bears most of the burden of treating children with autism because treatment means education. MacNeil visits two schools in New York – a public school in the Bronx teaching 700 children with autism and a charter school created in Manhattan as a model of possibilities in educating children with autism. With only 30 students, it can use one-on-one teacher/student ratios employing intensive Applied Behavioral Analysis – the gold standard treatment for autism.
Monday, April 25 Adults with Autism: Although federal law mandates educational services for children with autism, there are virtually no services when they become adults. MacNeil profiles Zachary Hamrick in Mahwah, New Jersey, about to turn 21. As his family contemplates the uncertain future now facing hundreds of thousands of young people like him, his parents ask themselves, “What will happen when we die?”
Tuesday, April 26 Autism Policy: The NewsHour series ends with a discussion of the public policy issues raised in the series, including the enormous discrepancy in the quality and availability of services for children and future adults in what the federal committee that determines research priorities for autism now calls a “national health emergency” with a panel of experts including: Dr. Thomas Insel, Director of the National Institute of Mental Health, Catherine Lord, Professor of Psychology, Pediatrics and Psychiatry at the University of Michigan, Ilene Lainer, Executive Director of the New York Center for Autism – a private advocacy group, and John Shestack, a Hollywood producer and the co-founder of “Cure Autism Now” a former advocacy group.
PBS NEWSHOUR will host an online content hub that will offer easy access to video of all the pieces in the series, as well as web-only features that are part of Autism Today, including:
First Look Online: In a brand new online-on-air cross promotion, check the NewsHour’s website after each night’s broadcast during the week April 18: We’ll post the next chapter in the Autism Today series online by 7pm ET.
·         Autism 101 – A primer on autism, how it’s diagnosed, the spectrum of disorders, and available resources. We’ll also look at the costs of austim, through the lens of the families profiled in the series and others.
·         The Story of Donald – A new look at Caren Zucker and John Donvan’s profile of the first child diagnosed with autism as reported in The Atlantic.
·         Live Chat with Experts – Viewers can ask their questions directly to the experts and doctors profiled in the broadcast segments via live text chat moderated by PBS NEWSHOUR digital correspondent Hari Sreenivasan.
·         Ask Robin MacNeil – Hari Sreenivasan will preview the series with Robin MacNeil in a special interview on the Rundown news blog. MacNeil will also answer viewer questions after the series concludes.
·         Join us on Twitter, YouTube and Facebook: We want to hear how you or those you know are coping with autism. Use the Twitter hashtag #autismtoday to ask questions or join the conversation on the series.
PBS NEWSHOUR is seen five nights a week on more than 315 PBS stations across the country and is also available online, via public radio in select markets and via podcast. The program is produced by MacNeil/Lehrer Productions, in association with WETA Washington, DC, and THIRTEEN in New York. Major corporate funding for The NewsHour is provided by Chevron, Bank of America and Intel, with additional support from the William & Flora Hewlett Foundation, the Corporation for Public Broadcasting and public television viewers.

Contact: Anne Bell 703.998.2175, Rob Flynn 703.998.2174.

There are also 890 references/links that come up when you do a search for autism on the PBS television website

The Tutors Have Arrived

So I think I mentioned here before how Riley was granted the Ohio Autism Scholarship. What that means is we now have two different tutors coming to the house a total of 8 hours per week, and they are teaching math, science, and Spanish (using music and art). They are seasoned teachers. They are loving and warm. They “get” Riley, and let me tell you the teachers who get her always fall in love, and that process has started.

While Riley is working on math with her tutor, Seth and I read a bit of Indiana Jones, then we do other important things. Sometimes we do a meditation, sometimes we do an abundance/appreciation exercise, sometimes we have a tickle fight. Sometimes we put our faces very close together and say, “You have one eye,” over and over. Seth and I rarely had time like this when he was tiny.

Your hat’s in my eye.”

Former State Rep. Jon M. Peterson, (a Republican!) is responsible for the creation of the scholarship Riley is receiving. I’ve heard he has a daughter with a form of autism. It is one of the first special ed voucher systems in the country. Parents who decide to pull their kids with autism from school may receive up to 20K per year in tutoring services by approved providers under the scholarship. Services must coincide with IEP goals, and therapies not specifically written into the child’s IEP are not covered. The school district is getting money (a lot more than 20K) from the state for Riley. It is only fair some of it should be spent on her, especially since she was not thriving in school.

It’s been two weeks since the tutors arrived. We are enjoying the support. Riley is fully engaged. We’ve learned as far as education goes, not to look too far ahead, but for now we’re in a good place.

If you’ll excuse me I’m going to go do something I’ve never done before. Write a thank you note to a Republican.

Riley’s always teaching.

((Hugs))

The only thing better than being a boy obsessed with Lego, and having a new Lego to put together…

is when your sister, whom you adore, suddenly, inexplicably, begins sharing your interest with you.

Here they are, beginning to work on one of Seth’s Christmas presents. We like to space things out. Save some for a snowy day. Seth is so happy she is playing Lego with him. Letting him lead. He is the Lego expert you know.

In other news, Riley hugged HT the other day. She is not a cold unaffectionate person by any means, and always allows our affection, but it was the first time she spontaneously hugged him, and he could not wait to tell me. It’s one of those things an outsider just does not get. If you were hanging out with us, you wouldn’t assume she’d never hugged her dad on her own before. It would be a given for most kids.

My dear friend’s husband died when her son was just five. She says, one of the hardest parts has been…the feeling of there not being another person who knows stuff like this. Shared intimate moments about your kid. Only Todd and I know what Riley looked like the morning when she was six months old, and he returned from a business trip and we lay in bed, and she showed him how she had learned to clap while he was away.

Only the two of us remember when Seth used to say, Yi Yuv You Yie-yee, (I love you Riley).

So when he tells me she hugged him, I get it. The depth of it, reflected in the glint of his eyes as he smiles.

When she shares her brother’s interest, we know what a big deal it is.We’ll remember it.

The gift of autism, for us, is we don’t tend to take things for granted.

I mean, sometimes we do, but typically we don’t.

She makes our lives so much richer.

Just ask her dad.

My Apologies to Kelle Hampton

There is an opportunity for healing here.

Recently I began following the amazingly beautiful blog of, Kelle Hampton. She’s a professional photographer. Her pictures are gorgeous. She has a little tow-headed three year old daughter, and the most exquisite baby girl born just a few months ago, with Down Syndrome. The story of Nella Cordelia’s birth sucked me in completely, and I’ve been reading Kelle Hampton’s blog ever since.

This mom is way more insightful than I was at her age. She is doing motherhood her own way, not listening to people who warn her how hard DS is going to be. She is a positive person. I believe in that, you know? It’s like, my thing. Law of Attraction. What you focus on gets bigger. My success is measured by my joy.

But lately, when I read her blog, (and seriously this has nothing to do with her) I can’t stand her. And not just because she looks great in a bikini a few short months after giving birth. Her beautiful story is bringing up so much pain for me.

Her little three year old, and the fun they are having, the sweetness and light of their relationship. It makes me cry. Because I wanted that. I wanted a happy little three year old girl. And my sweet little girl mostly just screamed at that age. And sometimes it is hard not to think about how much we missed. We weren’t having faerie parties. We were at occupational therapy, and autism doctors, and dozens of other therapies(not covered by insurance), etc. I wanted to be that mom. All laid back and fun, and crafty. But I was wasn’t. I felt like I was racing for my daughter’s life at the time. My brow was permanently knit. I wasn’t at the beach “sucking the marrow” out of life. I was worried. I was swimming in fear.

And then here is Nella. The most adorable little baby. I don’t know this family at all, but that little baby has my heart. I believe she will have the heart of every person she meets, her entire life. Her sweetness just oozes off the page of her mama’s blog. And it brings up another hurt.

Riley will never get the instant benefit-of-the-doubt Nella will receive.

It took years to get a correct diagnosis for Riley. I was so very alone as a new mother. No therapists coming to the house. No support from our pediatrician. No support from anyone, really. We had moved to a new state, and I hadn’t one friend nearby to bounce things off of. When Riley started having severe meltdowns, there was no one to hand her off to. How do you ask a casual friend, a neighbor, someone you don’t know well, to look after a child, who by the way, won’t stop screaming?

And this other blogger? She has such a solid support system. She has a whole huge community both physically where she lives, and on-line, celebrating her very special baby.

No one ever celebrated us. No one ever said, “Hey, you have a kid with autism, and it is going to be such an amazing ride if you allow it to be.”

No circle of women gathered around, treating me with reverence.

Todd did his best to support me, but he hadn’t a clue either. Both of us, relatively well adjusted ’til then, had panic attacks for the first time in our lives by the time Riley was three.

Oh how my heart goes out to those younger versions of ourselves. Oh that we managed to be kind to each other, under those circumstances, it just brings a lump to my throat.

And I thought I was okay. I thought we were in a mostly good place. But when I start finding fault with people, I have to stand back and ask, what’s hurting? Seriously, what’s going on? Especially if my fault with someone is that they are “too positive.” That’s just kind of funny, given what I believe. Oh ego, you are so very clever.

If given the choice, I wouldn’t trade the daughter I have for anything. She is mine and I am hers, and I do believe we’ve been together for lifetimes. She is the exact daughter I was supposed to have. I was meant to be her mother.

I had this very vivid dream back in 1994, before Todd. Six years before Riley would be born. A baby sea otter was taking me on an ecstatic ride, gliding me through the ocean. The love I felt for this little otter was pure God force. I’d never experienced anything like it. The love was so vivid, so powerful, so raw and wild, I woke up, my heart beating fast, and wrote it down. The next day I took the only medium I had at my disposal, and drew the feeling in crayon.

I forgot about the dream, tucked the drawing away somewhere, but the instant Riley was put in my arms it flooded back to me. It was her! The baby sea otter I loved. The baby that would take me to wild and amazing places. The soul friend-sister-daughter-mother who would lead me through the fire. I thought the drawing got tossed, but found it last year in a box that hadn’t ever been unpacked in several moves.

I have it framed in my office now. This drawing reminds me, Riley and I are doing important work here. We’re doing things I can’t even wrap my mind around yet. Kelle Hampton is doing her own important work. To entertain the thought that her life, is somehow better than my life? Source does not agree. And when we think thoughts that go against the truth of the Universe, it hurts! When we forget how absolutely vital each one of us is, to All That Is, that’s when we suffer. And when we suffer, we start finding fault with others.

And you know what? I never could have figured all of this out, if not for Riley and the places she has taken me. Loving her, has caused my heart to shift and open a  million times wider than it ever would have. My compassion muscles are really big now. This includes having compassion for myself, even when I’m ugly. Even when I make mistakes. Even when I think petty thoughts. But I can no longer leave things there. My soul won’t tolerate it. I have to dig deeper now.

So, my apologies to Kelle Hampton. Thank you for giving me this opportunity to grow. Keep “sucking that marrow” Kelle. You and yours are so very beautiful.

And we are too.

Touche’

Since she was tiny, we have done our best to correct Riley when she says something inappropriate. We know her heart, and know she doesn’t mean it, but sometimes she just comes across as bratty or rude, and well…she needs to know.

For many years, we’ve had do-overs.

Random example. She’d come to the dinner table, take a look at the food, scream, and run away.  I’d bring her back to the table for a do-over, demonstrating the appropriate action.

“Here’s what you could say instead: Mommy, I really don’t like green beans, is it okay if I only eat one bite?”  

Or she’d snap at one of us, meeting any question, (even those she would definitely want to answer “yes” to) with a “NO!”  The mere act of having to answer a question was too much to process.

“Riley, let’s think about how someone might feel, when you scream “no” at them like that? I want you to do it over and say more gently: No thank you.”  

I can’t even begin to tell you how many do-overs we’ve facilitated in her young life. The trick is, to take the emotional charge out of it. It’s like teaching a person a new language. If I were teaching someone English as a second language, I wouldn’t be mad at them for making mistakes, I’d just correct them. Social skills are a language too.

Yesterday was a long day. Lots of errands. The kids were in a loopy zone, not really paying attention to me. Goofing around, not being helpful, egging each other on. It made it extremely difficult for me to focus on getting what we needed at the grocery store. 

Once home, the grocery bags were too heavy for them to carry, but they could have opened the door for me. They could have moved their little behinds up the steps at a quicker pace as I stood there arms loaded behind them. They could have stopped screwing around in the doorway.

I could feel one of the bags starting to rip as I stood there waiting for them,

“Riley and Seth! Do you see my arms are full? Do you understand these groceries are heavy? Will you stop acting so clueless and hustle up those stairs please!”

Later, when I was calmer, I said, “I”m sorry. I know you are good kids. It’s frustrating when I feel like I’m doing all the work, and you aren’t helping. I need you to notice when I am struggling, and open the door for me, and at the very least move out of the way when I’m trying to get up the steps with bags of groceries.”

Riley said, “It’s okay Mom.”

And then, in her sweet voice, with no emotional charge or judgement she said,

“And Mom. Would you mind not calling us “clueless?” It didn’t really hurt my feelings too much, but it kind of made me feel like you don’t think we’re smart.”

I apologized, and though I feel bad for calling them “clueless,” her repsonse felt like such a victory, I can barely even beat myself up.

Walking the Tightrope

Second day of camp, I pick them up and Riley’s been in the office for the last hour. Her eyes are red. She’s spent. She won’t talk about it.

Todd is home, so we drop Seth off, and I take my girl out to lunch. A hip & happening place, appropriate for cool young women. No mac & cheese on the menu. She orders blackened fish. Looks around at the funky decor.

“I was on the slide, and I was scared, and I was trying to get my nerve up to go down, and this boy, he kind of yelled at me.”

She looks down, fiddles with her napkin, adds,

“He didn’t know I have autism.”

Sweet, sweet girl. Giving him the benefit of the doubt. He didn’t know.

So we talk.

We talk about how it usually goes better if people do know. How it works at Girls on the Run, and clay class,etc. How when other kids understand, they usually are really great about it. Really compassionate.

Our food comes.

“I think you should talk to them Mom,”she says, digging in to her fish.   

Trying to contain my enthusiasm,

“Okay. Do you want me to talk to the whole camp, or just your group?”

The whole camp gathers for assembly before they branch off into small groups. They all come together again at recess.

“The whole camp,” she says.

I tell her, “One day you will be able to advocate for yourself. You’ll talk to people and let them know what you want them to know about you,  but for now I am glad to do it. You’ll be really good at it one day.”

She smiles at me, then adds, “Well, one thing is clear. I love blackened fish.”

When we get home I call camp and get their approval for speaking at the morning assembly.

Later that evening, Riley and I review what I will say, and she freaks. She thinks maybe it isn’t such a good idea. I don’t dig my heels in, even though I’ve already talked to the camp administration, even though I think it is vital for her success this summer. Even though God damn it I need this break. Maybe I’ll talk. Maybe I won’t. We’ll see how it goes. I take out some words that might have triggered her.

Next morning, I somehow get her out of bed, and dressed, and ready to go. She sees the little index card I’ve prepared, and doesn’t melt. We don’t mention it.  

We get to camp. She is not running away. She knows I plan on talking and if there is one thing about Riley, it’s she would be so out of there if she really wasn’t okay with this. Todd and I look at each other. He runs his hand down my back.

Walking the tightrope, we go in.

All the campers do a morning song, and a Balinese dance they learned the day before. She’s beaming. Happy. Engaged. Twirling. Smiling. Not worried.

The main counselor introduces me. 

I tell them who I am, and I tell them about Riley. How her senses and nerves are “super duper.” How she feels things extra. How sometimes it can be overwhelming for her. I use the term “autism,” which Riley prefers to Asperger’s. She told me this the day before at lunch.

“Asperger’s has the word “ass” in it, and it sounds kind of foolish, and it is a possessive word, like…I’m not Dr. Asperger’s thing that he owns, you know?”  

So I use the word autism, and I tell the kids about my amazing daughter, with the super duper senses, who sometimes becomes overwhelmed, but you know that’s cool because there are so many really incredible things about Riley. And I name them. And I tell them how lots of really creative people are very sensitive. And isn’t that great at a camp with music and art and drama? And I tell them how inspiring she is. And how her bravery has made me more brave. And how lucky I am to be her mom.

And she sits there in a room full of dozens and dozens of campers, and she clasps her hands together to restrain her arm tic, which only happens when she is really happy. Really stoked. And she looks proud. 

Seth looks proud too.  

And we get out to the car and I breathe, because I went with my instinct, and not her fear.

And she let me.