ham and apple smoothies

a happy, quirky journey

Why the Notre Dame football story matters…

This week, I ran across a story about how two Notre Dame football players made football camp amazing for a little boy on the spectrum. The players took the time to visit this little boy at home before the camp and because of this, he was more comfortable in camp than in previous years and therefore interacted more.

I have to admit, this story made me smile and even tear up a little. Who doesn’t love a feel-good story, especially when all we seem to hear lately are stories about what’s wrong in the world? I admit it, I’m a sucker.

If these two football players were my sons? I would be bursting with pride.

But you know else should be bursting with pride? The little boy who went to camp, even though he found the camp overwhelming and a little scary. The little boy who went back year after year because he loved football and Notre Dame. The camp was surely a little more difficult for him than the other 600 kids who also attended but he kept at it.

Good for him. And good for all the kids on the spectrum who stick to their dreams, who have drive, even when things are a little more difficult for them.

Here’s the link to the story:

http://themighty.com/2014/07/how-notre-dame-football-players-helped-my-son/

wall climbing, notre dame, football, the mighty

keepin’ at it

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Some Thoughts On Being A Fraud….

This past weekend, Little Man and I went to an open swim at a local pool sponsored by an autism advocacy group. The pool is located at a campus that serves children with varying levels of medical issues, disability and abuse. I was hesitant to go, as I have never been to the pool before and sometimes get nervous doing new things. However, I am trying to branch out and not be so fearful of new things and, hey, the pool looked amazing online.

So, we headed over to the open swim.

It was a fun morning in the heated, saltwater pool, but more than that, it was a very eye-opening experience for me and – as cheesy and trite as it sounds – I think even a little life changing.

The pool was actually pretty full that morning and the children participating in the open swim varied in age, gender, race and how deep they were in the spectrum.

There was a little girl there who was maybe around 8 years old who was absolutely gorgeous. Beautiful. She appeared to have classic autism and was non-verbal. I found myself wondering if her parents were absolutely terrified because she is so physically beautiful. Good gravy, I was terrified for her with worry that someone is going to take advantage of her because of how physically striking she was.

Another girl was non-verbal, maybe 11 or 12 years of age, and just walked around the pool. She obviously loved the water .She approached me when we got into the pool and I smiled and said, “Hi”, and she said nothing but splashed me a little. It appeared like a happy splash, for lack of a better descriptor, but I didn’t know how to respond so I just smiled and kept moving, as Little Man was already halfway across the pool. I couldn’t help but wonder what was going on in her mind, you know? When I saw her mom walking with her to a changing room on our way out, I noticed that her gait was a little clumsy and her legs seemed a bit weak, so I completely understood why she would want to walk around in a heated saltwater pool for hours

When we were changing in one of the changing rooms so we could head home, there was a knock on the door and I said, “Just a minute!” and a friendly female voice replied, “No problem –we’ll wait! “Then a few seconds later I heard crying and someone started knocking hard on the door. I hurried Little Man along and as we opened the door, a little boy, rushed in, crying. His mother said, “I’m sorry. He doesn’t do well when patience is required.” I smiled and told her that it was okay, I got it.

But here’s the thing that occurred to me: I don’t totally get it. I may *think* I do, but even with his quirks, Little Man is very much different than so many other spectrum kids. I think people sometimes wonder why I always say that and I suspect that their interpretation is that I am in some form of denial that Little Man is autistic or that I am ashamed to say he is autistic.

However, the reality is more that I feel like some sort of cheat or fraud because while he has struggles, they are not the struggles of so many of the kids on the spectrum. For example, one parent was trying to keep his son from taking his trunks off in the pool and was trying to keep him from rubbing the shoulders of strangers. Meanwhile, Little Man and I are discussing how one of the weighted ping pong balls looks like Saturn. Yes, Little Man has a touch of the Sheldon Cooper. Yes, he has obsessive interests and still struggles at times with reciprocal conversations. But he doesn’t seem to have the same level of struggle that so many kids seem to have on the spectrum.

I ended up feeling ashamed that I worry about all the stupid stuff that I let get to me. I seem to end up with so much mom anxiety. If my main worry is whether Little Man will go to college or what middle school he should attend … I mean, really? Then I am way more blessed than so many parents of kids much deeper in the spectrum, who probably fear their own death – not because they are scared to die, but because they worry, “Who will take care of my child like I do when I am gone?”
(Here’s a blog post I like about this topic: http://autism-daddy.blogspot.com/2012/05/toughest-question-for-parents-of-kids-w.html )

And most of all, I am also ashamed because I felt pity yesterday, pity for the parents who have to be exhausted and worried. The reality is, they surely don’t want or need my pity, as the parents I saw at the pool all obviously loved their children, just like I love mine. They were just being parents, doing what parents do.

polar bear swim

a swim picture taken by Little Man this past summer

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Honesty

One of the “symptoms” of Autism Spectrum Disorder (ASD) is the inability to lie and the lack of guile.

Let’s think about that for a minute.

Society has agreed for umpteen centuries that honesty is a virtue and yet for someone on the spectrum, it is a sign of something being “off” in how their brain is wired.

Really?

I think it says a lot more about those not on the spectrum that honesty can indeed be pathologized and we all wring our hands and think, “Those poor kids!”

I think that instead of viewing these traits as a sign and a symptom of Autism Spectrum Disorder that they should be listed as a both a strength and a gift of ASD.

What do you think society needs more of: lies? Or honesty?

That’s what I thought.

headphones, beats, honesty, virtue

give me a beat…

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Be You….

Expectations.

What we should be doing.

Everyone seems to have expectations of others and more often than not, those expectations are that each of us will be just like everyone else.

And, if anyone actually is different, the expectation is that they will have enough common courtesy to make sure that they stand out so as to be easily identifiable as “other.”

People who look like everyone else but inside are different seem to weird people out.

So, what is someone to do when they are just a little different than their fellow man?

They do this:

masked man batman

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This is Real Life

This past weekend, Little Man said to me on the way to the pool, “Mom, Scott Joplin is the King of Ragtime.”

“He is?”

“Yes, he plays music that is known as Ragtime.”

“That’s interesting, sweetie. Is that from Wii music?”

“No, mom. That? Is real life.”

Point taken.

scott joplin, real life

real life

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I’m Just a Boy…

Last week, while on vacation, I took Little Man to my office to show him where I work.

He has asked me before what I do when I go to work so I decided to show him and then we would have lunch with some of my co-workers.

We discussed on the ride to the office how he would need to be quiet when we were there, as people were working, and I also emphasized that he was not to touch anyone’s computer. (He loves technology so in my defense that was fair subject matter for a debriefing.)

Once we got to the office, he was the perfect little gentleman, charming everyone with his self-introduction:

“Hi, my name is Little Man. I am just a boy who likes to play the Wii and with Legos.” Then? A handshake.

Just a boy?

What an understatement.

legos wii just a boy

just a boy

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More Wisdom

Today, while taking a walk, Little Man and I were talking about some of his favorite TV shows.

He said to me, “Hey, Mom, do you know why people tell jokes?”

I replied, “No, I don’t. Why do people tell jokes?”

He said, “Because they are funny.”

Point taken.

bridge walk humor funny

bridge wisdom

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Public Service Announcement #2: Advice

So, I was playing Wii with Little Man and apparently was not doing very well.

He said to me, “Mom, Let me give you some advice.”

I said, “Okay, lay it on me.”

He replied, “Try to do it the right way and not the wrong way.”

Um, okay. Thanks. Duly noted.

bridge boxed in

boxed in

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DC versus Marvel…Decided…

Little Man has weighed in on the highly controversial topic of DC versus Marvel comics.

Here is where he stands:

DC is better than Marvel because DC has Batman and Superman.

Superman is the best superhero because he is the strongest and therefore is the leader of the DC superheroes.

Batman is cool but he lives in a cave. (This results in a loss of points for Batman although he wins some points back for having such a cool Lego Batcave set.)

Marvel cannot be better than DC because Marvel has the Hulk and the Hulk is too violent for little kids.

The Hulk is scary.

Ironman is good, though.

But not as good as Superman and Batman.

Now we all know.

superhero marvel dc

superhero pose

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“The United States of Autism”-A Review

United States of Autism

I saw “ The United States of Autism “ last week and have tried many times since then to sit down to write a review and share my thoughts on the documentary-style film. However, I found myself following the same pattern: write something, read it, decide it doesn’t capture what I am feeling, delete it and start all over again.

Finally, after doing this four times, it started to dawn on me that not being able to figure out and put into words exactly how I felt about the movie was a perfect metaphor for how I feel about autism itself. Just like the movie, I also don’t know what to do with the subject of autism. Autism can be beautiful, chaotic, frustrating, heart-breaking, humorous, maddening, joyous and confusing, all at the same time, just like “The United States of Autism.” With that realization, here are some of my thoughts on the film.

The movie was not short on diversity. Created by Richard Everts with money from a Pepsi Refresh Project grant, ”The United States of Autism” aimed to portray different types of people affected by autism and the different ways they viewed and/or approached autism. Families with different cultures, socio-economic backgrounds, religion, and races were all interviewed.

Many scenes in the film were emotional to the point of being difficult to watch; one in particular involved a Muslim mother whose son was in the hospital with a severe respiratory infection. In the process of her son’s treatments, the mother was asked why she wanted the doctor to save her son, since he is autistic anyway.

Another aspect of “The United States of Autism” that stood out to me was that the parents of children deep in the spectrum hope for a cure. However, the parents of children with High Functioning Autism (HFA) and Asperger’s, and the children themselves, do not wish for a cure but instead want acceptance from society. I was especially happy to see Alex Plank , creator of the on-line autism community Wrong Planet interviewed on the question of a cure for autism. He spoke very simply yet powerfully about how he had no desire to be cured but was also sympathetic and understanding of the family members of those deep in the spectrum.

So many of the parents, especially the mothers, seemed to blame themselves in some way. Whether it was the mom who tearfully and honestly admitted that she sometimes wondered if she did something in her pregnancy that made her child autistic, the parents wondering “what ifs” about their choice to vaccinate or the parents talking about financial worry over paying for therapies, it’s difficult not to self-blame and think you could be doing more as a parent. (Been there.)

One very touching aspect was that the siblings profiled seemed to have nothing but love for their autistic brothers and sisters. One little girl – I believe her name was Daniela – broke my heart when she started crying, telling about how the people at school call her brother “crazy” and how much she doesn’t like them doing that. Then, my tears turned to giggling when a little girl, I think she was 8, talked about how she thought autism was great and the only time it was bad was when her twin sister with autism talked on and on about something and she wants to talk about something else. Her sister’s new favorite topic to talk about? Dictators.

There was some mention of vaccines and their possible relation to autism. Specifically, the parents who run Age of Autism were interviewed about how they believe the autism epidemic is definitely linked to environmental factors. There was also discussion of recovery, although what was meant by “recovery” wasn’t always clearly defined.

I do think “The United States of Autism” did achieve its goal of highlighting how autism affects people from all walks of life. I think sometimes the media can make it appear to be something that is a white, middle class issue and that is just not the case. It was eye opening for me to see the struggles of immigrants who are not only struggling with a language barrier but are also trying to discover a therapy course that will help their child. One family left a very comfortable life in Puerto Rico to move to the states in search of treatment for their son. They have yet to be successful and sometimes wonder if they made the right choice. It’s difficult to watch their struggles and but it’s also easy to be moved by how motivated they are to help their children.

The one thing that I did wonder about “The United States of Autism” was whether it was a film that is ultimately preaching to the choir. I know in my city, it was a special showing and I learned about it through an autism services site. The theater was small and there were a limited number of tickets. Because of this I imagine that most of the viewers were people who already knew something about autism. Is it a film that could do more good if people unfamiliar with the autism spectrum were the ones watching?

I don’t know.

What do you think?

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