Tag: Belonging

Sensory-friendly performances: The good, the bad, the happy medium

Sensory-friendly performances: The good, the bad, the happy medium

I’m about to say something that might seem to go against the grain, but I’m going to say it anyway.

Sensory-friendly performances aren’t inclusive.

There.  Feel better?  Me too.

Here’s why I feel this way.

When a play or a movie or, well, really anything goes about its normal business, things are likely to be loud, bright, overwhelming, and busy.  We can certainly acknowledge that this can feel downright volatile to anyone with “different” sensory needs.

I feel like organizations are SO hellbent to provide “autism friendly” or “sensory friendly” experiences that they forget one vital fact: This doesn’t provide inclusion, it provides a way for those with sensory needs to experience the thing separate from everyone else.  And that, my lovelies, is exclusion.

I’m gonna tiptoe out on a limb here, but what if – gasp – every performance or every day was sensory friendly?  Who would that harm?

What if places with sensory rooms at certain times (only during specific events) had those spaces (like a room to calm and regroup) ALL the time?  And why have they not done that yet?

Look, I want my kids to go to this thing or that thing just as much as anyone else.  And when we see a “sensory friendly” showing of something I do smile.  At first.  And then I realize that my kids won’t experience the thing along with their neurotypical peers.  They will get to share it with other kids like them, but they would get to do that organically if sensory friendly was just a THING that we could find any day of the week.

So why can’t we?

People/companies seem to think it’s out of reach.  Or maybe they think that one performance out of 20 that is done as sensory friendly is sufficient.

I can tell you right now, it’s not.

Meeting Temple Grandin

Meeting Temple Grandin

This past week I was fortunate enough to attend a conference where the speakers included none other than Dr. Temple Grandin, as well as Britt Collins (an amazing OT) and Joanne Lara, executive director of the organization Autism Works Now.
As an autism parent and someone who works in the business of helping people with disabilities, as well as someone who self-identifies as being somewhere on the spectrum, I have been anticipating an opportunity such as this for some time now.

When I arrived at the hotel where the conference was being held, I looked around for some signs of where to go next. As I looked to my left towards the in-lobby Starbucks (I really needed coffee), I saw her trademark western rodeo-style shirt. Temple Grandin.

If you know me personally, you may know that I can get a *little* star-struck. I walked up to the counter to order my coffee and found myself standing immediately to Dr. Grandin’s right side. Do I talk to her? No, she’s having a conversation with someone. Get it together, kid, you’re acting weird. Just order your coffee and pretend that you’re a functioning adult.

I followed my internal dialogue’s advice and ordered my coffee. I *may* have stared a little too much at Dr. Grandin, because a couple of times she turned slightly to look at me. Oops. Social graces are not always my strong suit.

I made it around to the space reserved for this event and found a long table covered with easily 100 different book titles. Many of these titles are already available in the Autism Lending Library that I manage, some were new to me. At the far end was Dr. Grandin, standing next to the many different books which she has written throughout her career. People were already gathering, and she was speaking with each of them individually. “Are you a parent or a teacher?”, she’d ask. Depending on the answers, she would carry on the conversation with questions about ages of children, different personal interests, and whether they worked with people who are autistic who have held jobs.

I found a book which I did not have in the library, and for which she’d written the foreword. I waited my turn and quietly asked if she’d mind signing it. I was holding back tears and a large lump in my throat as I did this. The moment that I’d been waiting for was actually happening right now, and I fought my impulse to ask her for a hug (I’m weird, but not that weird).

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I swallowed hard and asked for a selfie, and after the photo was taken I barely eeked out “thank you”.

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holy mackerel, I’m standing RIGHT next to Temple Grandin.  Is this for real??
She autographed books and stood for photos with literally hundreds of people as she listened to their stories.

At almost seventy years old, she’s had a lifetime to figure out what she can and cannot handle. I was pleased and impressed when she would comment that she was quite used to this if someone asked if it was too much.

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By now I’d moved on to other tables to find a large array of sensory items. Given that I manage a lending library that includes many of the items shown, I was happy to take a business card and sign up for the mailing list. I was very excited to see the same noise-canceling headphones that Speedy used at school, and quickly bought them.

I found a booth for an agency called Transitions which helps teens and young adults with the often rather abrupt transition to college. I thought of my now 16 year-old who may indeed have this struggle, and I spoke with a young woman who I think is likely autistic about this program and who they support. I was pleased to learn as much as possible about this program, because often I am asked by providers about available services in New York State.

When the conference actually started, I sat in the back of the very large room and tried to take in the sheer magnitude of it all. Noise filled the space as attendees trickled in, and soon it was almost unbearable. Eventually someone approached the podium and announced the start. He warmly introduced Dr. Grandin to the room, and showed a short film that included clips from the movie which carries her name. I’ll admit that I have not yet watched it, and typically we avoid films about autistic people because we live this. It’s hard to watch, to be frank. But after seeing this short set of clips intermixed with interviews with the stars of the film, I think I’ll be more comfortable watching it.

The hair on my arms stood on end as the gentleman introduced her finally, and every person in the room who could stand, did. I got choked up and realized that this amazing woman has spent her life talking about what it’s like for her, and that people are drawn to her story in such a way that a feature film about her life was made.

She said many things which did not surprise me: bring back art and shop and home economics to schools. Kids should work when it’s legal to do so, in whatever way speaks to their personal strengths. Parents must give kids the chance to TRY something, everything, rather than helicopter them. Presume competence, and support people in their strengths rather than fixate on deficits.

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Um, yeah. All of that.

I could go on for days, I really could. What I really want to say here is this: I know that there are people out there, particularly some adults on the autism spectrum, who have been angry about her messages about getting out and working. The impression I’ve gotten is that there are some who feel that her message ignores those who are not able to work for a variety of reasons.  I can’t speak to how each of you have taken her words, but I do wonder how many have gone to see her speak. Perhaps we just won’t agree. But I do feel that people should be able to work for a living doing something they love, regardless of ability, if that’s what they want to do. I feel that those who cannot work should still be supported doing something that they love, in whatever way they can do the thing that they enjoy.  She wants people to be included, not secluded, and in a way that meets them where they are.

The other speakers were absolutely important to the message of the day, and I would like to dedicate separate blog posts to them. I gained a LOT of knowledge from the speakers of the day, especially Britt Collins.  I will be writing about her because I’ve been putting in to practice some of her ideas in the past few days, and they’re working.  Can you say broccoli?  Or shrimp?  Yeah, WonderBoy tried both in the last two days.  Her work deserves a LOT of attention.

I will apologize for the quality of the photos.  I was using my phone and zooming all the way in… now we can see the downside to sitting in the back of the room!

Making friends

Making friends

When my youngest son was first diagnosed with ASD, I wasn’t sure what to think.  My husband and I tend to think rather clinically, and had done a lot of research, but there a great many unknowns.  What your child does (or does not do) right now isn’t an indicator of what they’ll do in a month, six months, a year, ten years.

One thing I was sure of when he went to preschool was that he was not making friends in the way typically-developing children do.  He didn’t really form any connections to other kids until just before he transitioned to Kindergarten, and even then it was more like he really looked up to the other child.

Recently we went to a cookout at the house of a family we’ve known for years.  Our kids have played together on and off all summer, every summer.  And up until this past weekend, WonderBoy hadn’t really connected with them. What happened took my breath away.

I’m not even going to apologize for this barrage of photos.  It all started with this moment:

 

 

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As the late afternoon hours went on, and the color of the sunlight changed gradually, we began to realize that the two had not parted ways for even one moment….

 

And as everyone gathered to eat, it continued on…

And on…

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And although we gave him many warnings when it came time to head home at the end of the night, he sobbed in his grief that he must leave his new friend.  The following day he asked for her by name.  Yesterday he asked me if I’d call her mother.  The boy has found someone he connected with.

Now it just so happens that she is the same chronological age as his developmental age.  Perhaps there is something to that, I do not know.  What I do know is that he has broken every Rule of Autism* so far.  Like his parents, he defies anyone and anything that says “you can’t”.  And that is really “au”some.

These photos were shared with the permission of the parents of the girl who WB bonded with. They’re an incredible family who is full of love and whose children know the true meaning of friendship. Because of the welcoming nature of their parents, these are kids who will grow up understanding how to be accepting.

 

COMMUNITY CONNECTIONS ARE KEY

I originally wrote this back in January, but as my blog has moved here, I didn’t want to forget this.  This day absolutely changed me in so many ways…

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(image shows the Cornell University hockey team with Franziska Racker Centers’ Executive Director Dan Brown)

“We envision a world where all people know they belong.

This is the vision of the agency where I work.  It’s not just our vision, it is my personal mission and a goal for the people who I work with every day.  And it needs to be your personal mission as well.

You now have one job: go out into the community and get to know someone with a disability.  Talk to someone who is different from you.  Include people with differences in your life, in your activities.  And take part in theirs. This should be the job of every single person in this room, no excuses.”

These are the words I spoke to the 28 members of the Cornell Hockey team at the end of their recent visit.  We have a great relationship with this team and with our community, and we wanted these young men to have a chance to visit the pre-K classrooms where kids from ages 3-5 learn together.  The classrooms are integrated classrooms, which means that children who have disabilities work and learn and play side-by-side with children who are typically developing.

When I first met this group, all they were told about me was that I had a son who is autistic and who went to this school.  All I knew about them is that they are students who play hockey, and that maybe one or two were willing to speak up and mention someone they knew with a disability.

As we walked down the hall toward the class, one of the guys mentioned that he had visited this past summer on a day when the Cornell Companion therapy animals were there.  “Guys, seriously.  They had a LLAMA.” was his main comment, and this was met by disbelief and some laughter.  I put on my tour guide persona (a.k.a. I walked backwards while talking to the group behind me) and launched into my “why this school is so awesome and by the way there’s a llama” speech.  It goes a little something like this:
“This school is incredible- really! When my son first came here, he didn’t speak yet, he didn’t play with other kids.  He was scared of the swings, and really would just hum to himself and play alone.  And through his daily therapies here, including occupational therapy, physical therapy, and speech therapy, he blossomed.  Oh- and once a week they get a visit from therapy animals, including the coolest llama ever!”

By the end of this well-rehearsed speech, we had reached the class.  The teacher- my son’s former teacher and my personal hero- stepped out to prepare the guys for how to handle certain situations.  The thing to know is that some of the kids in the class are still figuring out where they are in relation to the rest of the world.  And sometimes they can be too rough or a little up-close-and-personal.
After introductions were made, we all went to the gym.

For thirty minutes, I watched pure magic happen.

One boy hopped on a tricycle, shouting “you can’t catch me!”.  Immediately, the seemingly tallest member of the hockey team grabbed another trike and contorted his six feet or so of body onto this child’s toy.  And he couldn’t catch that boy after all, but he sure tried!

One girl grabbed the hand of a team member and dragged him over to the play structure.

Two little boys grabbed a giant inflated ball and proceeded to drag their new friends to the basketball hoop.

And several children who rarely approach anyone gradually moved in close to ask the name of one young man.

Magic.

To witness all of this was… moving to say the least.  I dreaded telling them when time was up, and hugs were shared from the guys in my group to these amazing children. As we left the room and walked back down the hall, I asked them this: “So! Who’s ready to start working with children in special education?”, which was met with a delightful chorus of “ME!” from all of them.  ALL of them.  post 14a

LETTING OUR CHILDREN BE OUR TOUR GUIDES

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(Above is an image of five people at a table, all reaching one hand in for a “high five”)

Okay, so literally no IEP meeting ever in the history of IEP meetings looked like this image. But I digress…
​ (By the way: IEP= Individualized Education Plan)
Oh my, IEP day.  It’s almost as daunting as D-Day (diagnosis day), only we get to relive it every single year, with mid-year reviews just for fun.  Because who doesn’t love big scary meetings on a biannual basis? <this is sarcasm>

On this particular day, we were meeting with the chairperson for the Committee for Special Education (CSE), the autism specialist, the school’s principal, speech therapist, school psychologist, occupational therapist, OT assistant, special education teacher, physical therapist, and Wonder Boy’s teacher. Add myself and my husband to that mix and you’ve got one really full table.  That’s right- there were twelve of us at this meeting.

It’s really no wonder at all that parents and caregivers are completely overwhelmed by special education.

Let me start by saying that at every single one of these meetings (and we attend them for Speedy as well), I thank the team for being a part of Team Wonder Boy (and Team Speedy). This really sets the tone, and it means that his parents are the first to speak.  This is a power move, make no mistake about it.  I do this very deliberately, because I want the very first words to be positive.

Once all of the introductions have been made, which alone takes about 15 minutes because there are so many of us there, we hear first from the primary teacher.  We are then asked whether the things she is seeing in the classroom are a good reflection of the boy we know and love at home.  His teachers are incredible, and yes, the boy they see is the boy we know at home.

Next, each of the therapists and various other Highly Qualified Professionals reads from their notes about his progress and regressions, and we spend time discussing what his services should look like for the remainder of the school year.

Then the big news came: while his progress has been notable, he shows enough regression data (where they track how much he regresses during each school break) to qualify for a 12-month IEP.  Wait, what?
My jaw hit the floor.  I was truly not expecting to hear those words at all.
We were asked about the plans for the summer, and we explained that we’d found a great program for the boys for the summer.  A camp with a 3-1 ratio of kids to counselors, one which works on skill building and allowing kids with disabilities to be kids first and foremost.

This was an epiphany moment for me- I realized that there’s something all special needs parents have in common.  You learn, quite quickly, to protect your child’s services fiercely.  They’re not always easy to come by, and in some cases are hard won.  So when the CSE chair asks you whether you’re declining a service, you may be hard pressed to confirm.  It took me a good five minutes, and a LOT of prodding on behalf of the CSE chair, to actually say out loud that we would decline summer services through the school district.

Another discovery came of that meeting.  During the course of the meeting, the speech therapist talked about working with Wonder Boy on his social skills.  I came right out and said that unless they could produce a child with a strong interest in all things narrated by David Attenborough, he really wouldn’t be interested in a social life.

I couldn’t have been more wrong.

It’s not easy for me to admit when I’m wrong, and I think that’s a fairly typical human trait.  We enjoy being right, especially about our own offspring.  I made an assumption that a lot of people do about autistic children- that they’re not interested in friendships.  And this one really shocked me, because it’s not like me to go so astray on something like connecting with other people.  But I did.  And thank goodness for a therapist with a poker face, she didn’t call me out on my assumption.
My correction came a week or two later, when we had all gone to the park.  Our two youngest boys were playing on the playground, and saw two children who were more or less the same ages.  And something really beautiful happened- Within seconds, Wonder Boy walked up to the kids and in a way that only our special kids can, shouted his name in the face of one of the kids.  He asked the name of the younger child, and then the boy’s older sister spent time teaching WB how to say her brother’s name.  After some time playing together on the playground, Wonder Boy sat down at the picnic table with the girl and asked her questions about herself.  He found out that she was a seven year old girl who had just moved into our neighborhood with her family.  He started the conversation with her, and the two of them chatted as though they were a couple of middle-aged coworkers who happened to run into each other in the supermarket.

Let me take a moment here.  HE started the conversation….
Wow.  It wasn’t at all that he wasn’t interested in socializing, rather that he needed to be given the freedom to do it in his own time.
I was speechless, and was reminded immediately of something that I talk with families about when they seek help at work.  These kids of ours are incredible tour guides.  We work hard to prepare them for the next stages, and we provide them with a whole rainbow of services, and at the end of the day they have the ability to completely shock us with what they DO with all that information.

The thing that I’m taking away from all of this, and I hope you will too, is that we must see the potential.  We must presume competence.  And lastly, we must believe in ourselves and our children.  They have beautiful things to teach us, if we just stop talking and let them.