Mixed feelings on World Autism Day

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.

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One in 68

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?

2014 Year in Review…

(Bear with me, folks… it’s a long one.)

I’m usually a pretty sentimental sap. Much to my family’s amusement, I cry a lot. Movies, commercials… you name it. I find emotional meaning in more than most people, and I tend to love reflecting and being introspective.

So, when I say that I have been counting down to close the book on 2014 since mid-October, you can imagine what sort of year it’s been.

Don’t get me wrong; life is always busy, and there’s always something. Over the last 18 years, I’ve come to accept that life is moments of beautiful in a sea of messy. I don’t expect it to be all sunshine and roses. But sometimes, stuff just piles on and piles on, and you can’t catch your breath. And that’s how my (our) year was, beginning as early as late January/early February. Continue reading