Tag: inclusion

What are your qualifications?

It’s a question that I get asked.  A LOT.
In my job I have the good fortune to do a lot of outreach with teachers, therapists, counselors (of the camp variety), program directors (also of the camp variety), parents, and many more people.

I talk with them about meeting a variety of sensory needs.

We strategize.

We spend a long time talking through very specific needs and finding solutions.

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Image is of a drawing of an incandescent light bulb, with straight lines coming out from the bulb as if to indicate a light has been turned on.

I love this aspect of what I do- both parts of my job are incredible, however the library outreach that I do often involves solutions that look rather like this:

[Images as follows- top left: a small room with white walls, colorful beanbags on the floor.  top right: a small space with a purple light and a beanbag on the floor.  bottom left: a clear plastic box containing toys, with the words “break box”.  bottom middle: a hand holding a pair of headphones with a cartoon-like panda face on the side.  bottom right: a young boy with short blonde hair leaning into a blue beanbag.  He is wearing a blue shirt with stripes and his eyes are closed.]

 

I typically share with parents that I have sensory needs myself, in addition to raising kids with a wide variety of needs.  This often leads to me sharing that I am on the spectrum along with my kids.  And I will discuss what some of my sensory needs are.

Occasionally I will be talking with someone (usually a teacher or Occupational Therapist) who asks the question: “Are you an OT? What are your qualifications?”

It’s an understandable question.  One the one hand, you wouldn’t ask your mechanic to do your dental work- you want someone qualified for that task.  On the other hand, I think that we live in a society utterly fixated on this question.  I suspect this is the result of generations of people who have been taught that the only road to success is a college degree.  Don’t get me wrong- that is one road to success, depending upon your personal definition of success.  I do think, however, that we have a long way to come in terms of recognizing that in order for someone to be qualified, they may have arrived there in a less-than-typical way.

It also brings up a very important point: Who better to ask than someone who lives it?

All too often in the world of disability-based conversation, much of the “talk” is happening without including those who live it.

To what end?

I think the mindset all along has been that the Experts are the ones who are qualified.  They’ve studied us from a clinical perspective and can certainly provide some of the really necessary information.  But unless they live with a particular thing themselves, can they truly know and understand what it feels like?  If you don’t wake up daily with anxiety, can you truly know how deep the impact can be?

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Image shows a seven-sided shape of multiple colors.  There are the silhouettes of six people in the middle, and the words “Nothing about us without us” in black print.

You may know this one: “Nothing about us without us”.  It’s an old phrase, and basically it means that conversations about (and decisions affecting) a specific group of people MUST ALWAYS INCLUDE that group and requires complete inclusion and participation in said conversation or decision.

We have a long way to go.

Fortunately for me today, I was speaking with a small group of people, one of whom knows me.  She very gracefully interjected when I stumbled over the question of whether I’m an OT, and she said “she is qualified by a lifetime of personal experience”.  And she’s right.  I’ve been living as me for a glorious (and often really awkward) 44 years.  I’m an expert on my sensory needs, and have become an expert on my kids’ sensory needs.  And after a lifetime of trial and error with a fairly small sample size, we’ve figured out quite a few things. We’ve learned things worth sharing. And sometimes it’s even the same stuff recommended by the experts.

I don’t have a degree.  I don’t know if I’ll ever finish, and that’s just fine by me.  I am doing the best I can with the information that I have, and I don’t let myself sell me short just because I’m lacking a piece of paper stating that I’ve Learned All The Things.

Holiday inclusion

Holiday inclusion

It’s fair to say that Speedy and Wonder Boy, for all of the ways in which they drain us of energy, have also worked really hard and have come a long way developmentally.  It’s also fair to say, though for different reasons, that Wonder Boy has been more excited about Christmas this year than he has ever been in his entire life.  Since Thanksgiving he was asking when we would decorate for Christmas, and luckily for him we tend to do just that the day after Thanksgiving.

He has been walking around singing Christmas carols and has learned about Chanukah and Kwanzaa, and wants to know why we aren’t Jewish (we aren’t Christian either, but I’m not here to go into the derivation of most Western Christmas traditions…).  He has watched all the movies about Christmas, and has visited with Santa three times so far.  Let’s just say, this kid is super stoked.

A few weeks ago, my husband came to me and asked me to take December 15th off of work.  I looked at him and said “We’re going on the Polar Express, aren’t we?”

I love doing that to him, I won’t lie.  Not taking away his chance at a surprise, but being able to guess the secret.  He does not like this as much as I do, I promise you.

A mix of incredulity and humor washed over his face, and he asked me to please keep it a secret from the boys.  We invited my mother, who has really been our anchor, to join us.

If you’re not familiar with the story, The Polar Express was a book written by Chris Van Allsburg, and it was published in 1986.  It tells the story of a boy on the brink of no longer believing in the magic of Christmas.  As a 43 year old who still believes in this magic, I have a hard time understanding his viewpoint, but whatever.  I believe in Santa and I always will, and you will never tell me otherwise.  This holiday, and others like it, bring out a magical love between family, friends, and even strangers.  Our homes glitter with lights and kindness and good smells of things that we share with everyone.  We open up our homes and our hearts.

In 2004, The Polar Express came out as a movie and many were captivated once more by this beautiful story. Tom Hanks voices several characters, and you can even see a little of him in each of the characters faces.

Across the country, there are towns with active train stations and some of them host “Polar Express” excursions.

When we arrived at the cavernous marble train station, two hours from leaving our house,  I was hit with blaring music of the holiday variety.  There were so many people- a mix of pajama-clad Polar Express riders and regularly-clothed people about to embark on a trip to New York City. There were people in wheelchairs.  There were children with Down Syndrome.  There were autistic children, including my own.  There were -gasp- people without any disability whatsoever! This was a truly inclusive environment.

Wonder Boy quietly took it all in, as he does, and Speedy happily chattered about this person and that person and OHMYGOSH there’s a mechanical Santa! As we rode the train, Wonder Boy discovered that if he flapped his hands, the lights inside our train car looked very interesting, indeed.  Speedy listened for the train whistle and his eyes widened whenever he heard the sound.  Actors playing the parts of the characters in the book came around and chatted, letting Speedy chatter at them and kindly answering their questions. Wonder Boy barely said a peep for two hours, and even turned down the cocoa that was offered.

After a two hour ride, Santa finally arrived in our train car, with his elves giving out the “first gift of Christmas” (one of the reindeer’s bells) along the way.  The tension was palpable for the boys, and they seemed about to pop when he finally reached our seats.  He asked my mother if I’d been good, and then asked me if my husband had been good.  He never asked if the kids had been good, because he KNOWS.  He always knows.

After the ride, we stopped for a quick bite to eat on the way home.  Being the very literal person that he is, and a person who only eats in the restaurant or at home, Wonder Boy refused to eat in the car, insisting on eating when we got home.  There is no point in forcing a child to eat in a way which makes them uncomfortable, so I said okay.  And at nine o’clock at night, tired and happy, he ate cold nuggets and cold french fries.  And you know what?  That’s totally okay.

Birthday parties don’t have to be torture

Birthday parties don’t have to be torture

One of the things that I have always struggled with is the idea of children’s birthday parties.
When I was a child, my parents hosted birthday parties for me.  I am certain that they were enjoyable, and that my mom handled them with ease.  She doesn’t have the same anxiety that I do, and isn’t derailed by something as seemingly simple as gathering children together in one space for play and eating cake.

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My friends are probably going to kill me for this

So when did things get weird?  I suspect that a lot of it has to do with my desire to not hang out with people I don’t know.  I’d classify the parents of all of my kids’ classmates as People I Don’t Know.  And that sets my amygdala into massive panic mode.  It may also have something to do with the fact that when my oldest was turning 8 (maybe? I can’t remember now), we invited his entire class over for a birthday party and no one came.  Not one single child.  He was devastated, I was devastated, and I may have vowed never to put any of my children through that again.
For many years, we simply celebrated with family members, and that worked…sort of.  I can’t help but worry that I deprived them of some vital growth experience.

Fast forward quite a few years, and we now have kids with diagnoses, kids who struggle in loud places, kids who mostly do parallel play.  Kids who aren’t developmentally on the same plane as their peers.

Last year, Wonder Boy was invited to a birthday party.  It wasn’t his first invitation, but we felt like he was ready to give it a go.  He handled it mostly well, and advocated for when he was ready to leave.  But it was definitely clear to us that he stood apart from his classmates.  While they all joked and laughed and played together, he sat there playing with Silly Putty and staring off across the room.  They didn’t exactly exclude him, but no one tried to really include him much in the conversation.  And that’s fine, they’re kids, and they haven’t really learned that skill at that age (they were four-going-on-five).

This year for WB’s birthday I decided that rather than attempt to plan a party which would make me ridiculously anxious (because let’s face it, it’s all about me), I would schedule a playdate with his closest friend.   She happens to be at the age where he is developmentally, and it really works for both of them. She also has two older sibs, so Speedy has friends to play with as well.  All of the kids get along really nicely, and we enjoy spending time with their parents. It’s a win-win for everyone.
Not long ago, WB and Speedy went to the youngest girl’s birthday party, and they did pretty well with the limited time and the very active play (at a place with a climbing structure and ball pit).  While we weren’t ready to do that for WB, we appreciated seeing how well he did there. Her parents are smart- they provided pizza and cake, and the treat to go home with was a balloon with a bottle of bubbles attached.  Simple, affordable, and not some tiny cheap toy that will become the source of sibling rivalry.

I like to provide a takeaway in each post, something which really shows what I learned and that you can use when you’re feeling frustrated or unsure of how to handle a situation.
My takeaway from the birthday party stuff is this: You know your children, and what will best meet their needs, but also don’t be afraid to give them the opportunity to surprise you.  We know that WB can handle a standard birthday party, but we also know that he’s happiest at a playdate with fewer kids.
Besides, who really wants to assemble 25 goody bags?

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.

The art of inclusive play

Yesterday I was very fortunate to be able to attend a conference held at SUNY Cortland about inclusive play.  My colleague and I heard from speakers about building accessible playgrounds which meet the needs of people with disabilities as well as those without, and the importance of having two groups of people with really very different needs be able to play- not just side-by-side, but actually together.

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Seriously, why is my head so gigantic?

The first speakers were from an organization called Shane’s Inspiration, and I think I’m in love with their mission and their vision:
“Our vision is to foster a bias-free world for children with disabilities.  Our mission is to create inclusive playgrounds and programs that unite children of all abilities.” (taken from their website)

They don’t just create the playgrounds, they offer programs with schools so that kids without disabilities can be paired up with kids who are different from them, kids who may play very differently than they play. There is a whole curriculum around inclusive play that can be used by schools, daycare programs, even summer camps.  Why?  Because every facility out there should have a way for inclusive play to happen.  Because sometimes we need help with the “how” of it all.

In speaking with one of the presenters later, she said “I hope that one day I’ll be out of a job”.  One day, kids may not need special programs to help them buddy up with kids with disabilities in order that they may learn that there are more similarities than differences, and to not be afraid of those differences.

Okay, so I also maybe geeked out a little (a LOT) when I met the Yogibo lady (a.k.a. my new BFF Amber).

If we’ve met, I’ve probably told you about Yogibo I My children have two of the stuffed animals at our house, and the Autism Lending Library that I run has a couple.  I’d love to fill the room with their products, and yesterday I met the manager for one of their local-ish stores.  I gave her the library’s flyer (which shows our sensory room) and my card, and invited her and her team to visit the library and learn more about what we do.

 

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Yogibo Hug (I didn’t hug Amber, but I wanted to)

We then were invited to tour the SIMS Lab (Sensory Integration/Motor Sensory).  I immediately began concocting ways that we can have something like this in our community, and thought of the Occupational Therapy Department at one of our universities.  As the boys are attending a group there once a week, you can bet your bippy I’ll be asking if they’ve considered setting up a similar facility.

One of the first things that struck me was that when kids come to the Lab, they get to select their preferred lighting.  Lighting makes a big difference for many of us with extra sensory needs, and that impressed me.  The place was full of gym mats and Yogibo beanbags, a zip line that leads to a suspended ball pit (!!) and all manner of things to climb, things to toss, things to land onto.  I mean, come ON.  How cool is that? Being able to access a place like this and get all the sensory input one needs in order to be able to better self-regulate is so important, and this Lab is providing that for kids.

I also met a woman who is working on the changes to a local (and very NOT inclusive, currently) playground.  There is this presumption sometimes that the way to make things inclusive is to simply stick a ramp on things.  Um, no.  There is so much more than that.  You must consider the gamut of disabilities, and which types of equipment might provide something that may be needed by someone with those disabilities.  We talked at length about what they might provide to assist kids for whom the wide open space and the very large concept of PLAY might be disregulating.  They hadn’t thought of that, and I hope we’ll be talking more as they continue to develop their designs.

So here’s my homework for you: go to a local park with a playground.  Try to put yourself in the shoes of someone with a disability- that can be anything from being blind to being in a wheelchair, being hypersensitive to being hyposensitive, having trouble navigating even the seemingly smallest hurdle to having trouble navigating a social situation such as the playground.  Look at it through these lenses, and see what could be different.  And then work with the community to create change.

I would like to thank SUNY Cortland for offering families and professionals an opportunity to come together to learn about inclusive play, adaptive physical education, the use of technology, and music therapy programming.  

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.