Category Archives: Life on the Spectrum

Mixed feelings on World Autism Day

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Once again, the time has come where blue bulbs grace front porch lights and enormous monuments around the world are robed in blue light. It’s World Autism Awareness Day… an international movement that has most certainly helped to make people “aware” that this thing called autism exists in our world.

But it has not necessarily brought the understanding that it should have. Despite all the media attention, so many people still fail to understand what the spectrum is, or how people exist as a part of it. There is so little understanding of high-functioning autism, or atypical forms. There is so little understanding of what life is truly like for those whose entire existence are consumed with caring for a person with severe autism. And the nuances of diagnosis – being able to distinguish between Asperger’s, PDD-NOS, or other atypical forms – have been removed from the system, for better or worse.

I mention this because at this juncture in our lives, I am experiencing mixed feelings about what it takes to “be” autistic. What does it take? What does it mean? Can it be “cured”? Does improvement mean it has “gone away”?

My son just turned 13. Last week we had a regular appointment with his psychiatrist – the one who initially made his autism diagnosis over 6 years ago. As we were talking, we discussed some newer evaluations and assessments that we had done. We discussed how he is doing in school. We discussed the behaviors that are posing challenges for him right now.

And Dr. K said that if she met Riley right now, she would probably not place him on the spectrum.

So what does that mean?

Does it mean he was never really autistic?

No.

It means that all of the intervention and therapies that we took advantage of WORKED. All the many hours of ABA and OT and ST and changing schools did exactly what they were meant to do.

Me being “that mom” at IEP meetings, advocating like crazy and never taking no for an answer?
It worked.

Me refusing to listen to nay-sayers like my ex-husband who swear that there is nothing wrong with my son that screaming and punishment can’t fix?
I was right.

But listen… this isn’t about vindicating me. It’s nice, but it’s not what this is about.

What this is about is giving other families hope that intervention can help. What this is about is listening to your gut instinct about what your child needs and fighting for it.

My son still isn’t without challenges. It’s just that as he grows and matures, he has caught up developmentally to the point that sensory issues are not the most pressing issue for him. Now his biggest struggles stem from moderate to severe ADHD, and everything that goes along with it… impulse control, struggle to focus, personal space, and all the rest. We still need our IEP. We are still working hard to keep grades up and teach study habits and find ways to cope with stress and fidgeting and social situations.

All that being said… for some families, there will be a limit to improvement. Some families will – sadly – never be as lucky as we have been. And I call it luck… because while we put in the work to get to this result, life could just as easily have gone a different way for us. I don’t know the reason why some people have severe autism that never improves or only improves to a point with therapy, while others like my son make enough progress to be “removed” from the spectrum. It’s one of life’s great questions… one for which I don’t have answers.

So today, I’m still wearing my blue. I’m wearing blue to honor our journey to get from angry nonverbal toddler to smart funny teenager. I’m wearing blue for all those other families… both for those who are working every day to make progress like my son has, and for those families who are working every day just to get through the day. For those who will live with this incredible, beautiful, and frustrating lifestyle for the rest of their lives.

Is my son “cured”?

I honestly don’t know how to answer that.

He is what he is, and who he is. Maybe I don’t need an answer to that question.

Am I afraid of what others will think?

Yes.

Will others think that I’ve been making all this up, just like my son’s dad has sworn all along? Maybe. But I hope they won’t. I can only speak what I know to be true.

I am not a doctor or a therapist… I just happen to know a lot of really good ones, and fought to get access to them for my child to get past his own personal hurdles. I don’t know if the label you put on it really matters. My child needed help, and I got it for him. It wasn’t easy, it wasn’t cheap, and it meant me taking on the mountain of emotional work that is advocating for one’s child in a world that doesn’t really quite understand him… a world that is built for and run by neurotypical people.

But I’d do it all again. Just like every other caregiver out there who loves someone on the spectrum. We just do what we can do. We get through each day, and take advantage of opportunities for help and progress where we can find them. At the end of the day, it doesn’t matter what we call it, or where on the spectrum we live. Anyone who loves an exceptional or 2e person is just doing what we can to give them the best life possible, even if that looks different for every family.

Because regardless of label or diagnosis… I love this life, and my kiddo – struggles and all… and I wouldn’t trade either for the world.

Celebrating Different… World Autism Awareness Day 2015

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I have a confession:

There was a time when I felt ashamed of the Munchkin’s ASD.

Now, before you call out the lynch mob, let me give you a little background…

The Munchkin wasn’t properly diagnosed until he was 7. Looking back, he had traits I should have recognized, but he didn’t have some of those more “classic” signs that might have set off a bell for me. He was social. He was cuddly. He didn’t have OCD tendencies like stacking things in patterns and lines. Even though I recognized the pigeon-toeing and the lack of eye contact and the verbal delay, it didn’t add up. His dad and I split up when he was 3, and then his dad was deployed to Iraq for a year. (If you know anything about military deployments, then you have some idea of how difficult a deployment is… not just the absence, but the reintegration upon return.) While we were still in the reintegration process, I survived a date rape and sexual assault; of course, I didn’t share this with my then-five-year-old… but I could sometimes swear that he’s empathic. I know he knew somehow that something was wrong. He may not be able to put a name to an emotion, but he certainly picks up on the subtle energies of the people around him.

So, how exactly does a 3- to 5-year-old child cope with stress? It was these very big things, coupled with Munchkin also having “hidden asthma” that took some creative investigative work to diagnose, that delayed us figuring out exactly what was going on in that little brain.

I remember the day Dr. K. told me for certain. It was surreal. I didn’t really absorb it right away. And even then I knew the Munchkin’s father wouldn’t accept it. How was I going to handle this? What would his peers think? Was he going to be labeled? *gasp!* Your child being “labeled” is supposed to be the worst thing that can ever happen, right?

So for the first couple years, I was discreet. I shared with his teachers, of course, and the principal. I’ve been lucky enough to be able to keep Munchkin at a small private school; this has allowed him much more personalized attention in these early years. It wasn’t until two years ago that I realized perhaps, in this case, discretion was NOT the better part of valor. Two things happened that began to change my mind.

The first was seeing a now-famous TED Talk by Dr. Temple Grandin. Though it was recorded in 2010, I was just getting into TED around a year after the Munchkin was diagnosed in 2012. I listened to this brilliant scientist say:

“We’ve got to think about all these different kinds of minds, and we’ve got to absolutely work with these kind of minds, because we absolutely are going to need these kind of people in the future.”

FUTURE.

This well-educated, well-spoken, highly regarded, brilliant, AUTISTIC scientist who had already left an indelible mark on the world was telling me my son had a future.

Of course, I knew that. But when we first heard “autism”, the future I had envisioned changed. I didn’t know what it would… COULD… look like. I was lost. But then, Temple Grandin reminded me that not only did my son have a future, but that his mind is NEEDED in this world.

That started turning the tide for me. I began to read, and research, and start re-framing the way I thought and spoke about our new narrative. But I was still being pretty discreet about it.

Until the day the Munchkin came home from school in tears.

Unlike a regular “rough day”, this time he said, “Mommy, [Little Girl in my Class] told me today that I wasn’t going to my school anymore.”

“Well, why did she say that?”

“Because her mommy told her that. Her mommy said that I get special treatment, and that nobody wants me there, and I don’t get to go back.”

…*cue awkward pause whilst I scooped my jaw off the floor*…

This is one of those moments that every parent dreads. You know, deep down inside, that one day you’re going to have to deal with one of those climactic “school situation” moments just like on tv, and you imagine yourself handling it like June Cleaver instead of Roseanne Barr, but something goes wrong and you all end up on Oprah.

Fortunately, I managed to be calm and non-confrontational. I spoke with the teacher (who was equally shocked). But it was then that I realized that, by not disclosing my son’s truth, by downplaying our situation, I had created another problem. And worse, I was sending the message that my child wasn’t good enough.

And there it was. The light-bulb.

Ever since the Munchkin was little, he’s been trying to please his daddy, and nothing is ever good enough. That’s a novella for another day… but suffice it to say, I suddenly realized I was failing at being his advocate. And it was time to step up.

My first step was a letter to all the other parents in our class. Then social media and my official “coming out” as a spectrum mom. And people were shocked.

What? How long? You can’t be serious…. But he talks. He goes to a “regular” school. Are you sure? Maybe you should get a second opinion…

Fast forward three years… and let me answer some questions from our journey thus far:

  • Yes, we’re sure. The Munchkin has high-functioning autism spectrum disorder (formerly known as PDD-NOS, or even mild Asperger’s). He’s not mean, aggressive, stupid, or being shown preferential treatment.
  • No, I’m not the one who diagnosed him, and No, I don’t need another opinion. I am very comfortable with the opinions of his team of 3 MDs, PsyD, 3 BCBAs, ST, OT, LCSW, and 6 (count ’em, SIX) ABA therapists who all have come to the same conclusion: Munchkin is on the spectrum. He also has asthma, ADHD, and generalized anxiety disorder.
  • NO, I do not for one fraction of a second believe that his autism was caused by vaccines. That theory has been debunked, and the quack who wrote it disbarred. Further, even if vaccines DID cause autism (which they DON’T), I would much rather my child be autistic and alive, than die from some common preventable disease. Autism is not a death sentence. Communicable diseases can be. (And don’t even get me stated on herd immunity.)
  • Yes, the Munchkin is on several medications. No, not a single one of them is “for” autism. He is treated for asthma, allergies, and ADHD, and we manage everything else with behavioral intervention (plus coffee, patience, and lots of trial-and-error).
  • No, I am not “loud and proud” about my son’s ASD because I’m showboating, fishing for sympathy, grasping for the spotlight, or suffering from Munchausen’s by-proxy (and yes, I have been accused of ALL of those things). I am outspoken because I am not ashamed of my child. He is beautiful, smart, funny, curious, and has a heart the size of the Yukon, and I love everything about him. I do not want him to ever – even for a moment – believe that I don’t love and accept him for who he is.
    Do we work on social skills and behaviors? 
    Yes.
    Do I encourage him to try new things, try to manage his sensory responses, and hold him accountable for his actions?
    Damn right, I do.
    But I also forgive. I listen. I try to put myself in his shoes. I learn. What works for other kids doesn’t work for THIS kid, because he is different. NOT LESS. Just different.

A funny thing happens when you start being vocal about something that is stigmatized. Eventually, someone is going to slowly, maybe even in a whisper, raise their hand and say, “Me too.” This is the kind of discourse that my rhetoric professor would tell you has the power to change the world, because lack of discourse is what creates that stigma in the first place. Two of the most humbling experiences of my parenting ‘career’ have been the moments when two other moms of small children told me that our story – that me speaking out and standing up for my child – helped THEIR children get properly evaluated and begin to seek early intervention.

Which brings us to World Autism Awareness Day. This year, for the first time, the Munchkin is at a place where he’s starting to grasp the concept of autism. To understand that his brain works a little differently than others. Unfortunately, he also gets a lot of mixed messages. I know that sometimes, he doesn’t feel safe to be himself.

So it was time. It was time for me, and our family, and our “village” to stand up and be proud. To show the Munchkin how much he is loved just as he is. That he makes people happy, that he IS enough. Over a couple of weeks, via blog and social media, I asked folks to Light It Up Blue with us on April 2nd, and to send us their photos so that I could show the Munchkin how many people believed in him.

And I was not disappointed:

Just a few of our wacky "tribe" who wore blue to support the Munchkin on World Autism Awareness Day 2015.

Just a few of our wacky “tribe” who wore blue to support the Munchkin on World Autism Awareness Day 2015.

 

The Munchkin loved every single picture. He kept coming back to the computer saying “Mom, show me that one again!” This community, our little “village”, didn’t just “light it up blue”… you lit up my kid. To say I’m grateful for the spark you gifted my child with that day would be akin to calling Mozart “just a songwriter”.

So it’s official. We’re going to do this every year. We are going to CELEBRATE different. World Autism Awareness Day, though an important and serious occasion, is also a cause to celebrate. Because even in cases of severe, life-altering ASD, we are celebrating that WE ARE. That ASD families share a bond of hope and joy and pain and struggle and different-ness. As Temple Grandin says, my son is “Different… not less.”

I am going to celebrate that difference. I’m going to keep speaking out. I will continue to advocate. I will continue to try to empower my child, to teach him to love himself, to teach him that he IS enough, even while I work to help him succeed, in whatever form success will look like for his life. I am proud of him, and it is my distinct honor to be his mother, and his advocate. As long as I draw breath, I will rave about this boy who has so changed not just my life, but now the lives of others, just by being his own, amazing, different, autistic, authentic self.

And THAT is something to celebrate.

One in 68

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One in 68.

That’s what they tell me. That my son is one in 68.

You see, my Munchkin was diagnosed with autism spectrum disorder in 2012, just after he turned 7. I had my “coming out” as an autism mom two years ago on social media. (Read that story here.)

ASD is a part of our life every day now. Some days, you’d never know that the Munchkin isn’t a neurotypical kid. In fact, he’s just about to “graduate” from the social development portion of his ABA therapy program (even though we’re still working on emotional regulation, sensory integration, and other challenges). Some days, I jokingly call him “my little Sheldon” (all you BBT fans should get the reference). And there are some days when his rigid thinking rub me entirely the wrong way and it takes every ounce of my willpower to react to him with patience and understanding, rather than anger and frustration.

But even on the rough days, I couldn’t be more proud of this kid. Over the span of 6 years, he went from being a nonverbal, frustrated toddler to a young boy who is clever, curious, interactive, and who likes to argue with his mom about bedtime and flossing and whether Jaws is really real. In that time, I haven’t just learned about autism. I’ve learned about myself. I’ve become more patient and understanding than I could have imagined (even though I still fail miserably sometimes). I’ve found new depths in my heart. I’ve had to face questions I couldn’t have fathomed dealing with. And even when I hate it, I wouldn’t trade a moment.

So I want to share some of this feeling, these moments, with all of you.

April 2nd, 2015 is World Autism Awareness Day, and for many years now, there has been a global campaign to “Light it up Blue” for Autism Awareness. This campaign is gaining traction, as some of the worlds largest cities and places get involved. This year, companies, athletes, products, and communities the world over will be wearing blue to support Autism Awareness. Even the Great Pyramids in Giza will be lit up in blue!

If the Sydney Opera House, French’s Mustard, the entire Island of Barbados, and even the New York City trash trucks can #LightItUpBlue, then so can we.

Therefore, the Munchkin and I hereby officially invite each and every one of you, regardless of where in the world you are or what you are doing that day, to join us in wearing blue to show your support for the autism spectrum community. Wear your blue shirts, break out your puzzle piece jewelry, stop by Home Depot and pick up your Philips #LIUB light bulb for your front porch. Heck, just print out this handy-dandy #LIUB selfie sign and shoot a few pictures, no matter what color you’re wearing.

Then, if you’re of a mind to share, the Munchkin and I will welcome posts, comments, emails, and submissions via social media of your 2015 Light It Up Blue pictures!

Autism spectrum disorder is not a death sentence. It doesn’t necessarily even need “cured”. It just needs to be understood. My ASD hero, Temple Grandin, says that people on the spectrum are “Different, not less”. Let us all seek to understand. The ASD community has amazing things to offer to the world, if we can only learn to listen.

World Autism Awareness Day 2o15 is less than 7 days away… won’t you @LightItUpBlue?