Tag: self-advocacy

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.

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?

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.

He advocates

I remember a time in the not-so-distant past when I wondered to myself when or if I would hear my youngest child speak in sentences.  If I’d ever hear the soft “I love you, mommy” or have a conversation in spoken words with him.

It took me a great deal of time and effort (and study) to come to the realization that communication can happen in many forms, and that you can never truly know what the future may hold.  As it turned out, he would speak, and there are days now where I wonder if I’ll ever enjoy silence again…

Part of communication is advocating for one’s needs.  We’ve become quite accustomed to the ways in which he advocates, and today provided a perfect example.

He walked across the living room today while the room was mostly silent.  He grabbed his headphones, a pair of black and white noise-muffling over-the-ear headphones which do a fairly nice job of reducing nose levels in a room.  In this case, the room was already pretty quiet, so I’m going to assume that he was seeking the gentle squeeze, the proprioceptive input that the headphones also provide (his first method of advocating for what he wants and needs).


The headphones have a panda face on each ear, and are just so sweet that I asked him if I might take a photo.  “No”. “No?” “No.”  And that, my dears, is that.  No.  He did not wish his photo to be taken.  (his second advocacy)

He then asked for a snack, and guided me through exactly what he wished for.  This isn’t so much advocating as requesting, but you could count this as well.

It takes being truly comfortable with your space and who it contains to be able to do what he did, and I am forever grateful for the fact that he knows without a single doubt that his voice will always be heard, his communications will always be taken into account, and his requests always considered.

Yesterday, I took both boys to their first dance class- a movement class for kids with special abilities.  I was so excited that he wanted to try it out, and they had a wonderful time.  We saw a girl who had been in Wonder Boy’s preschool and it was remarkable to see how much she’d accomplished since those days.
When we were getting ready to leave, WB said that he did not want to sign up to return.  While I was saddened by that, I also have to respect that he made his wishes quite clear to us.

We must always consider people’s needs, no matter how they communicate but especially those who are not able to communicate verbally- look for other ways in which someone is speaking to you, whether that be in actions or in response to your actions.  Take time to meet people where they are, rather than force your methodology and your ideology on them.  And for the love of pete, respect people.  

How to raise self-advocates

I think it’s safe to say that I’ve always advocated for what I want and need, when I know what that is.  My parents did a bang-up job, whether they knew it, of teaching me to ask for what I want and need.

Look at that face.  I was definitely up to no good.

In high school, I figured out very quickly how to get close to teachers and get things such as slightly better grades (offering to do all the photocopying goes a long way) and even a cup of coffee from the teachers’ lounge during my junior year.  Hey- I never said I used my powers for good!

Honestly, I’m not really sure what my parents did to create this person that I am.  I seldom make much sense to myself.  On the outside, I may appear social and easy going, and there are times when I truly feel that way.  But the inside may feel totally different.  And then other days, I feel giddy and child-like, but must maintain a professional exterior:

Photo by Dave Burbank Photography

I think I’ve come a long way in the last few years.  I remember a conversation that I had with a friend and some of her friends (I really didn’t know them well, and it’s possible that I did not make the best impression).  We were talking about what to do when our kids need services at school but the school isn’t on board.  I stared in amazement at the people around me who were all saying they didn’t think they could insist on what their kids needed.  Um…what’s that now? As I listened to them say these things, I saw something very interesting happen with their body language.  They physically became smaller.  Their bodies, their voices, everything about them shrank.

My reaction was to get bigger, louder, more powerful.  “These are your children.  If you don’t advocate for them, who will?”

Blank stares.

“No but really!  Your job here is to go to the school district and demand for the services that your child needs to succeed!”

I may have lost them at that point, which is why I say I’ve come a long way in the last few years.  In part because I’ve been working directly with families and want to be professional because I love what I do!  And in part because I’ve learned more about who I am through raising the boys. I’ve learned how better to connect with people to help them figure out what they need, because I’m simultaneously doing that at home.

I think I was trying to write about how to teach our kids to be self-advocates, and it may seem that I’ve wandered away from that path.  I believe that it’s a two-step process.

  1. We must learn to advocate for our needs as well as those of our children.  We should learn to recognize what is truly needed and not be afraid to ask for it.
  2. Through that, and through teaching our children that we respect that their bodies and their needs are truly theirs, we will have done what we are here to do.

My husband and I watch the show Speechless, a sitcom about a family who works together (and sometimes work in spite of one another) to get what they need.  One of the kids in the show (J.J.) has cerebral palsy, and the mum (Maya) is a staunch advocate who fights for (and usually gets) what J.J. needs.  We love this show because it does not steer away from using humor as well as talking about some really serious issues faced by those with disabilities.

In the most recent episode, Maya helps a group of other parents by teaching them to demand what they need.  For the first time in a long time, she feels that she’s really doing something incredible by helping these parents find their voice.   It goes sideways when the district realizes that her son is getting way more services than they’d ever provide…(watch the video clip below)

Maya and the District

SPOILER: In the end, she works with the principal to find cost-saving solutions to meet everyone’s needs.

Just for fun, because he’s awesome, here is a video of Zach Anner sharing his views on the show:

On a side note, did you know that Micah Fowler, who plays J.J. DiMeo on the show, actually has cerebral palsy?  In a bold move, Hollywood actually cast an actor into the part he was born to play.  It doesn’t happen often, and it’s reason number 1 why this gal doesn’t watch shows about autism (because despite the fact that 1% of the world’s population is autistic, Hollywood can’t seem to turn up an autistic actor).

So.  To sum up:  Ask for what you want, even if you think you won’t get it.  Teach your kids that their bodies and their thoughts and feelings belong to them.  You won’t be sorry at the result.  I promise.

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).


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

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.


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.


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!

When our children are their advocates

When our children are their advocates

Seeing our children advocate for themselves is the goal of many parents. We teach them the rules of living in the social world and we teach them to question that which they do not understand.

The method to getting there is a little more labor-intensive with children on the autism spectrum and/or with ADHD. My husband and I often talk about taking the “scenic route” to get to these goals, as we often have to navigate our children’s various challenges along the way.

For neurotypical children, it starts early. From the first time that your toddler tells you “no!” they are well on their way to understanding self-advocacy.

post 12

(Image shows a young boy looking out a window)

This sometimes can take a year or even two years longer for some children, and may never happen for others- not in a standard way, that is.

Behavior is communication

Remember this phrase- it will get you through the tough moments, I hope.  Behavior is the communication of need, my mother tells me after a lifetime of working with children and families in crisis.  This is absolutely true, and the behaviors we see don’t always translate in a very obvious way.  This is to say, when you see your child jumping on the couch all the time, this doesn’t always mean that they want to jump, but they are trying to communicate something…

But what??

If behavior is the communication of need, then the next step is determining what they are telling you through their behavior.  A person with a sensory processing disorder has a need for certain types of movement and sensory input, and there isn’t just one type of thing that will fulfill that need.

(You may hear an occupational therapist refer to proprioceptive and vestibular input.  These are connected to how we perceive our body’s position based on movement.  If you have a sensory processing disorder, the information may not be reaching its intended destination in your brain, or may take longer to get there).  

A “sensory diet” is a list of activities that is typically provided by an occupational therapist.  This “diet” is designed to help your loved one with his or her sensory needs, and includes a variety of activities such as:

post 12a

Using a body sock!
(Image shows a boy standing up inside a stretchy body sock)

post 12b

Smooshing into a beanbag!
(Image shows a boy lying on top of a beanbag, pushing into it with his face)

Other helpful activities can include swinging or gentle squeezes.  I like to think of it this way: for people with a sensory processing disorder, it’s as if they don’t always know where they end and the world around them begins.  The information coming into their brain through their five senses is getting jumbled, and this input gives the brain confirmation of where someone’s “edges” are.
I picture a comic strip character: thick, dark lines outline the character.  When you take those thick outlines away it becomes more difficult to tell where that person ends and where their comic strip world begins.

I may seem to be getting off topic, but I promise, it all leads to one place (remember- we’re taking the “scenic route” to get there).

Do you remember what I said about behavior?  It’s all about communication- for our loved ones who take a different path to get somewhere it’s all about getting their needs met and helping us to know how they feel.

If you follow my blog you may have read the post about social stories.  If you haven’t read it yet, you can find it here.

This past Sunday, we decided to try the trip to Target again, with a twist- this time we only went to Target.  I went with WonderBoy, my husband, and the Teen.  There’s a lot to be said for the three-to-one ratio.

post 12c

(Image is a boy in a store, holding a stuffed animal against his chin.  There are two people                                                                 behind him, looking at DVDs)

WonderBoy stimmed the entire time we were there the previous week, but this time he decided to sit in the cart.  This provided him some sense of security, and he was more at ease.

I reminded him of what we were doing: “We’re just getting a few items today, and we only have time to be in Target today, okay?”  I found myself repeating these words on what felt like an endless loop.
“Just getting a few things today,” he’d repeat.  Then he’d ask, “And then we will go to the mall?”
This has been the struggle- to get him through these social situations like shopping. “No, not today.  Today is just Target.  We will have time to walk around inside Target once we get what we came for, okay?”
I wanted to be sure that he understood what we would be doing today.  “Remember, once we’re done shopping we will pay and then go out to the car with the things we bought.  Then you can have a special treat!”
After finding the special treat of  his choice, we paid for our items and made our way out to the parking lot.

With papa on one side of him and me on the other, we took a moment to congratulate him- “You did a great job in the store today, buddy!” to which he replied, “that wasn’t me.”  That told me so much with three words.  He continued by later telling me that he didn’t want to talk about it.

You may wonder why I connected this moment to a post about using behavior as communication.  For our children, communicating how he felt about his success in the store involved more than simple words.  He showed me through body language, and through his need for time in his sensory room when we were home.

That level of advocacy is something that makes my heart fly above the clouds.  We were told early on that he might never talk.  For him to be able to tell us that he isn’t in the mood to discuss this major success in his life goes beyond just the words themselves.  It tells me that the day was hard for him, and that we’ll talk about it on his terms.

Behavior is the communication of need.