Tuesday, April 28, 2015

I Spy....Self-Advocacy

The other day Caden and his daddy were playing I Spy.  Caden said I spy something blue.  After looking around for a few minutes, his daddy told him I just don't see anything blue Caden.  What is it?  With a huge grin, Caden replied it's me daddy.  Now completely confused, his daddy asked what he was talking about.  Again with a huge grin, Caden replied you know autism, remember I have autism daddy.

Yea, I know I'm back to "that topic" again but that interaction means so much more to me than an organization.  First he recognized that the Light It Up Blue event that we went to earlier this month was for people like him who are on the spectrum.  We were lucky--we went to an event on a college campus that involved upbeat music, dancing, and felt like a celebration.  He danced and sang and danced some more.  In some ways, it probably felt like a party for him.  A party about autism.  Essentially a party for him.

Second he is starting to really see autism as a part of who he is.  I think that level of personal awareness and acceptance is a pretty big deal.  A few days ago, he was playing and a few boys came up to see his razer cart.  They started asking him if he knew about the ghosts that lived behind the building and he replied I don't like to talk about that because I have autism.  They asked what autism was and he told them to ask his daddy.  Later though he asked how he could explain autism.  I am still searching for an explanation that he can use but I have a feeling that with enough conversations he will eventually come up with his own definition and it will be exactly the right one for his autism.

Since then he has begun to ask more and more questions.  Sometimes when he is having a difficult day or something is difficult for him, he asks if it is because of his autism.  Sometimes he does something really great in school or a video game and he asks if it is because of his autism.  Of course nothing is entirely because of autism but I love that he is trying to understand this part of who he is.  He acknowledges that some things like emotions are really really hard and that those challenges aren't just going to go away.  He is starting to understand what autism therapy is all about although he acknowledges he doesn't always like it nor does he always want to do it, or understand how it is suppose to help.  He is trying to grapple with some glimmer of understanding that the same elements that make certain aspects of life really hard also make other aspects of life really fun or easy.  For example, his brain is very logical--everything is black and white for me.  This makes him amazing at math and at the same  time makes language extremely challenging.  He doesn't understand how that's possible but he is trying to understand it.  I don't have a great answer because I don't always understand it all either but I do know that some how seeing both sides of the hand that he has been dealt in life will help him to be more well adjusted, confident, and happier in the long run.

I'm in no way trying to paint a pretty picture of every moment of autism.  My giggle monster is struggling with some pretty big anxieties right now because his brain won't let him forget them or be distracted from them.  Things like being able to handle competition are still well outside of his comfort zone.  We don't have the sleep issues conquered in the slightest.  We are still working on helping him find ways to gain the sensory input that he needs while staying safe.  Every day holds the potential for a new challenge or a new opportunity.

I'm not sure I can put my point into words but I felt like I owed it to Caden to try.  The moment that he identified with autism.....I don't know, it's almost as if a huge weight was lifted off of my shoulders.  I really can't explain it but that moment has opened the door to a lot of conversations.  None of those conversations are easy and honestly I don't know if we always give him the "right" answers.  But I never imagined 6 years ago when he lost all language that we would ever be at this point in life.  As he started to regain words, I didn't know if he would ever be able to reveal such deep emotional truths about himself to us.  With so much negativity and bullying that occurs, I didn't know if he would ever be able to accept this part of his identity and I surely didn't imagine that he would stop a conversation that he was uncomfortable with (the ghost story) by stating I'm not okay with this because I have autism. That's self-advocacy and I guess what I'm trying to say (in a lot of wordsis that I am beyond proud of him and that he truly is one of my heroes.

Learning to dance in the rain.......

Saturday, April 4, 2015

The Light I Celebrated

On April 1st I announced in one of my classes that it was Autism Month which promptly led a student to share that her sorority was holding an event on April 2nd at the clock tower to "light it up blue."  We moved onto other announcements and eventually the day's class topic. I didn't think anymore about the event until the student came up to me after class and asked, if Caden and I would be at the event.  I immediately defaulted to a few excuses about bedtimes and other reasons that made it impossible for me to commit and then I spent the rest of the day....thinking about the event.  

I haven't supported Autism Speaks for a few years and I don't intend to this year either.  The more I thought about it though, I realized I really wanted to support my students and the enthusiasm that they had for the event.  They are, after all, our future teachers, psychologists, speech therapists, occupational therapists, insurance agents, and so on.  I want to support them taking their awareness/acceptance/support of autism into those future careers.  So much in the same way I made my decision about Autism Month, I asked Caden if he wanted to go.  He thought the idea was interesting and he loved that there would be dancing and sugar.

So we went.  It was an amazing evening that I have wanted to blog about since I got home but I've been hesitating because I feel like I am keeping a dirty little secret that I know will upset some of my friends in the autism community.  But then I started looking at pictures and I realized something about Thursday night.  It wasn't about the color; the clock tower would have looked just as cool in red or purple or orange.  It wasn't even about the organization; the entire time I was there the organization wasn't discussed but a lot of other students saw the light, heard the music and they stopped over at the event.  They asked questions and we talked.

The light I supported that night looked like this:

[caption id="attachment_367" align="aligncenter" width="300"] UW-La Crosse Students Supporting Autism[/caption]

And it looked like this:

[caption id="attachment_365" align="aligncenter" width="300"] Elf-The Amazing Autism Service Dog[/caption]

When the crowd and the music became too overwhelming, Caden found a spot of his own to celebrate in his own way.

[caption id="attachment_368" align="aligncenter" width="221"] Caden and Mommy Dancing[/caption]

Thanks to his big sister's photography and editing skills, the night even looked like this:

[caption id="attachment_366" align="aligncenter" width="225"] The Clock Tower[/caption]

And when the evening was done, the light I supported looked like this:

[caption id="attachment_369" align="aligncenter" width="285"] Family[/caption]


I'm really glad we were there Thursday night.  Students asked thoughtful questions,  my daughter posted her picture on Facebook which opened the door to conversations with a few of her friends, and Caden has continued to talk how much fun he had at an "autism dance."  I'm considering the night a victory and I hope the lights that burned so bright Thursday night continue to shine for a long long time.


Wednesday, April 1, 2015

April and Autism—That’s Cool Month


Awareness versus Acceptance.  Autistic versus Person with Autism.  Disability versus Characteristic.  Challenge versus Gift.  ABA versus Playtime. Nature versus Nurture. Inclusion versus Exclusion. Sameness versus Difference.  Blue versus Red.

All perfectly acceptable topics for the month of April…the month designated as Autism Month.  But for the last few years the theme for the month has been disagreement, arguing, fighting, disrespect, and hurtfulness.  My first “April” was in 2007, a few months after my giggle monster had been diagnosed with Autism Spectrum Disorder.  I was almost excited for the month because I knew people would be talking about autism and I’d have the chance to find resources and engage in the conversations that only seemed to be happening in therapist offices and private phone calls at that point in life. The designation of April created a place and space for conversations to happen and they were happening all over the internet. I found facebook groups that led to some of my closest friendships today.  I “met” people through their blogs; I’ve sat on the edge of my seat following their highs and lows over the years.  I even started my own blog in hopes that something in our journey would be useful or comforting for someone else out there like so many blogs have been for me.

But then something started to happen.  I don’t even know what the initial “event” was but people started trying to claim one set of experiences as the Truth.  By default this meant anyone else’s experiences were wrong.  Struggles began over who could and/or should speak about autism and even over what those conversations should be.  Each year that struggle has become increasingly hostile.  Moderators have shut down facebook groups because they couldn’t find a way to bring the struggles back to meaningful conversations.  Blogs have gone silent because writers don’t want to constantly have to defend their experiences or maybe they worry about the future generations that will read those comments and think hey they are talking (fighting) about me. A community has truly become divided.

I guess I don’t need April.  We live the giggle monster’s flavor of autism each and every day.  I know the research and when I need answers I can do more research.  And honestly I’ve become much more confident in this journey than I was six years ago.  I still wake up some nights drenched in sweat over worry about the future but I have a lot of “moments” to cherish that can usually carry me through the rough patches.  So I wasn’t sure if I wanted to venture into the Autism “thing” this year.  To be completely transparent, I hadn’t even written my April 1st blog post because I just wasn’t sure if I wanted to go there.

Then this morning Caden was sitting at the table working on math.  I casually asked him if he knew that April was Autism Awareness month.  He pointed out that he had no idea what that even meant; I explained that it was a month that people talk about autism and can learn more about it if they want.  Without hesitation he replied cool.


I’ve thought about that all day.  And he is right.  It is cool.  April is a space and place for conversations to occur.  I owe it to Caden to throw myself into the month and see if I can offer anything useful for someone somewhere out there.  Maybe I will find myself in some negativity and I’ll have to figure out how to respond but at least that’s a choice I have.  Caden doesn’t get to choose his struggles but I’ve never heard him complain about them either.  So I’m going with I’m going to call it April and Autism—that’s cool Month because my giggle monster says so.

Disclaimer: I feel I should probably add that a few minutes after our conversation Caden did ask if Autism was a present holiday.  And honestly maybe there will be along with some cupcakes because April seems like a great place and space to celebrate my blue-eyed giggle monster for all the wonderfulness that he is.