He ate what?

 

 

Many kids on the autism spectrum also have sensory integration dysfunction.  This is something I’ll spend more time on, but I’d like to speak about eating difficulties.

You may have already encountered this- your child will only eat certain textures or foods that are only white or only bread products.

Before you say it, yes, many kids have this issue.  But it goes deeper for kids with sensory needs, and can cause a whole host of nutritional problems.

For some kids, there are actually links to gastrointestinal distress and eating problems.  Before you can decide if something is a sensory problem, you should always rule out medical concerns.

At the conference I recently attended, I heard an Occupational Therapist talk briefly about eating difficulties in kids with sensory integration dysfunction.  I’ll admit, it’s kind of a hot topic for us spectrum parents, and something we worry a lot about.

My WonderBoy eats only a few foods: chicken nuggets, peanut butter sandwiches on wheat bread cut diagonally, or a plain bagel toasted with butter, cinnamon and sugar on top.

That’s pretty much it, with only a little bit of variation.

I was reminded by this OT that it’s important to avoid the “food rut” where we let them eat the same thing every single day.  Admittedly, this is hard to do when you’re trying to manage multiple kids with multiple needs and you just want to help your kid eat something.

I remembered that “first, then” works really very well with WB.  So yesterday I asked him to try something that he wouldn’t normally eat, in order to gain access to the food he really wanted.

Y’all, it worked.  Really!

Since yesterday, he’s had four bites of banana, a bite of shrimp, and even BROCCOLI.
Now, our Speedy really loves raw veggies, so we’ve been a bit spoiled with him. I mean, how many 7 year olds actually love asparagus??  Yeah.  He does.

So tonight I decided to capture the broccoli moment on film.  Please remember that I am never forcing him to eat it, and he absolutely loathed broccoli before this moment:

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.

 

How a comic book character changed my life

How a comic book character changed my life

Anyone who knows me personally knows that I have a fondness for a certain comic book character.  My desk at work is decked out with a bobble head, a figurine, and my coffee mug and all are based on this character. I even have a tattoo based on her.

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Over the years, many people have asked me- “Why Wonder Woman?”

This all started several years ago, when I started running.  I fully blame my husband for this- he started running to get healthier and was always gone! In order to spend time with him, I started running as well.

Now, this was something that I swore I’d never do- I’m a terrible athlete (I have no attention span to speak of for things which don’t hold my interest) and I complain. A lot.

So naturally, something which requires a certain amount of dedication makes total sense, right?  Well, it does if you know me.  I have a tendency to barrel through life.

I used a Couch-to-5k app on my phone to gently prod me through my training.  It was probably the best thing I could have ever done, and I remember being terrified the first time it wanted me to run one whole mile start to finish.  ACK!  But I persevered, and eventually decided to run a 5K.  An actual race. With bibs and timing and other people. Holy crow, that was scary.  Running it with my best friend was the only way to go!  And I vowed right then that I would get a Wonder Woman tattoo after I completed my first race. The first photo you saw was right after the tattoo artist had filled in the color.

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There I am, after having sprinted to the finish line.  Trust me, don’t do that.  I nearly threw up in a trash can after that little stunt.  And I’m pretty sure my bestie will never forgive me for totally leaving her in the dust. That was VERY un-Wonder Woman-like.

It was hot.  It was mid-June and I had moved my body 3.1 miles.  I felt like crap, but I could only focus on one thing. I had DONE it.

The Wonder Woman persona consumed me, for one really important reason.  We all have times in our lives when it feels as though we are under attack.  In raising kids on the autism spectrum, that attack comes daily.  With her on my side, I could quite literally face anything that came my way.  With my shield and my gauntlets, and with a strength that comes from deep within, I could take on the world.

Fast-forward to my next big race, the Cooper River Bridge Run  in Charleston, South Carolina.  This is a 10k, or 6.2 miles, and you cross two bridges and finish in downtown Charleston.  I decided to register as a fundraiser, and raised money for the MUSC Children’s Hospital.  I told my friends and family that if they could get me to $2,000, I would run in costume as- you guessed it- Wonder Woman!

Within a matter of hours, the funds raised had leaped beyond $2,000.00, and I promptly hopped onto the internet to order a Wonder Woman running outfit.

Yup.  We’re nerds.  It cannot be denied.  And I wasn’t the only person dressed as Wonder Woman, either.  There are most definitely others out there who identify with the strength of a character who can take on anything that is thrown her way.

My friend even made me the proper cake for my 40th birthday, which also turned out to be a surprise party!

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So, you may still be asking why.
This weekend I went with my husband, my mom, and one of my kids to see the movie.  I spent the entire two and a half hours utterly transfixed.  And really, when you’re in the second row from the front, transfixed is a guarantee.  The screen wrapped around my brain.  And I fell in love with her all over again.

There’s a scene wherein she takes gunfire from every possible direction, and she barely breaks a sweat.  Damn.  That’s incredible.

Here’s what it comes down to.  When you are trying to take on the world, and it keeps throwing you curveballs, you need an idol.  It helps to have an image of someone who cannot be defeated, who will not be defeated.

There are times when I am not sure I’ll be able to do this.  I cry at night sometimes, thinking of just how unfair this is.  But then I remember where my shield and gauntlets are, and I pick them up.  I dig in my heels and blow the hair out of my face and wipe the sweat from my brow.  And I persevere.

Just imagine what you can do… the possibilities are limitless.  And as my favorite character said, “It’s about what you believe. And I believe in love.  Only love will save the world.”

 

Quieting the anxious mind

Quieting the anxious mind

It’s 5am. Speedy is up and out of bed a full 30 minutes before his alarm clock will beep.
Wonder Boy is still asleep, having recently started sleeping in his own bed after 5 long years of sleeping in our bed.

Before we move forward, I’d like to take this moment to talk about the co-sleeping thing. There are many schools of thought here, ranging from “Oh my word, I’d never do that” to “yes, my daughter/son has been sleeping in my bed for 10 years”. When we asked Wonder Boy’s specialists what they thought of this situation, they responded with this nugget of wisdom: “Only you can decide what you’re comfortable with.”

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I look really comfortable, don’t I?  The truth is, I love moments like this one, but it’s not comfortable when you’re actually trying to get sleep for yourself.
Now, while it may be true that only we can decide what we’re comfortable with, the advice didn’t exactly solve our problem. Namely, my husband and I were sharing our bed with a child who is the human equivalent of a Staffordshire terrier in terms of body type (short, squat, with a really big head) and ability to slam into a person with unmatched force. SUPERFUN.

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Just when we thought we’d never get our bed back, and had begun drawing up plans to fill our entire room with one giant mattress*, I tried putting him to bed one hour later. We’d been down this road before, with no success. I wasn’t convinced it would have any impact at all.

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*No, we’re not building a giant bed, but doesn’t this look comfy? 

BAZINGA! We have sleep! For one blessed week, he’s been sleeping in his own bed. Now, he still gets up at odd hours and tries to climb into our bed, but we’ve been able to successfully redirect him back to his bed. WOW. [insert angelic choir sounds here]

Okay, back to my original story. Where was I? Oh yes- it is 5am and Speedy is wide awake. He’s standing in his room in the dark singing his new favorite tune: Watch Me (Whip/Nae Nae)

Then he launches into the song he learned in school about human rights. Which he sang in a muppet voice. At full volume. In the dark.

This is the way his brain seems to work. On Planet Speedy, there are limitless distractions and “ooh, SHINY!” Moments. There are songs to be sung, dances to be danced, jokes to be told. Only for him, they need to all happen ALLATONCE.

Knowing how his brain is working, the next question is how to quiet the anxiety and the constant internal impulses that are hitting him from all sides.
Some of the worries that his heart carries right now include being a total failure (at 7) and being afraid of heights because some day when he’s an astronaut he’s going to get shot out of his rocket by a slow-moving missile, and that’s why he never wants to fly in a plane…
Yet this same boy cannot understand why it’s not safe to tell strangers your address, or to walk up to someone on the street and try to take their dog’s leash from their hands.

One thing that we are able to do for Speedy to help with his anxiety is to set him up for successes. This weekend he ran in his first race- a 1-mile fun run for our local summer festival. The pride he felt from that moment was visible, and he needed a tally mark in the “win” column.

The next day was his baseball game, and he was able to accomplish his first base hit and an RBI! My husband, who is one of the coaches, actually jumped for joy, and it was the smile on his face that was medicinal for me.

Everyone on the team congratulated him, and he’s still talking about it this morning.


These seemingly small things are not small in any way for a kid who is so full of anxiety. These moments in life are the ones which will remind him that he is able to do anything he sets his mind to do, and we will continue to provide him with these opportunities.

The scary things are sometimes the best

Sometimes the biggest and most terrifying steps in life can be the ones that save us.

Six months ago, I walked away from the job I’d known for 8 years (in a field I’d worked in for my entire life) to start my new career.

To say that I was terrified is a dramatic understatement.

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What will we do for childcare?”

Having worked from home for 8 years with a fairly flexible schedule, this was the scariest question. How do you normal office-dwellers do it??

Obviously, we figured that one out.

 

I’ve worked alone for this long, won’t that be weird to be in an office?”

When I left the solitude of our home to go be in an office every day, what happened next was unexpected… or at least it was to me. You’re probably reading this thinking “well obviously, I could have told you that this would happen.”

I started really seeking out opportunities to participate in the world around me. Much to my husband’s amusement, I even joined the Special Ed PTA and am being nominated to be the secretary. Because you know, I like to do ALL THE THINGS.

I found my tribe, I found the place where I can truly be myself, and I have grown more in six months than I ever thought possible. I have dreams again, the people and the agencies I work with every day inspire me, and I once again have that feeling that we can change the world.
I thought I would never feel that feeling again, after I left the naivety of my twenties.

Finding your passion isn’t as simple as sitting down and thinking about what you want to be when you grow up. Sure, that’s what we’re taught to believe, but the reality is that it may hit you in one big “a-HA!” moment or perhaps several smaller micro-moments.

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(Me, presenting sensory-related things to people who actually sat and listened to me! For two whole hours!)

How it strikes you will vary, but the fact that there is something out there for all of us is undeniable. You too may find yourself telling your executive director, “I have the funnest job ever!”*

 

And we will be here for you when you do have that moment.

 

*Yes, I actually did that.

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