Tag Archives: awareness

Why my grass is long…

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If there’s one thing I miss about my hometown, it’s this:

It was never hard to get the grass cut.

That probably sounds a little weird.

When I still lived “down home”, I had neighbors and friends who knew me and my story. I had a church family that stepped in to help with things like this. I had uncles and cousins who showed up without asking (or begging).

Life changes. I now live 35 miles and a world away. I left the church because they were teaching my child to hate his grandmother and others. My grandparents are gone, and now there is emotional as well as physical distance between our extended family for reasons that don’t need shared.

When I had a full-time job and wasn’t living with chronic illness, it was of no consequence to keep a lawn guy on retainer.

Now, we’re struggling to make ends meet. My mom and Antonio are bending over backwards and working overtime to pay my bills as well as their own. The lawnmower we have (a small electric push-mower for my nearly-half-acre) died last year and is beyond repair. We can’t afford a new mower, but can’t really afford to put someone on retainer again either. No uncles or friends from church show up in the afternoon with their mowers to help anymore. No one asks if we need help because it looks from the outside like me and my mom are healthy working people who could push a heavy mower on our own. We aren’t friends with the neighbors. Antonio is the “man around here”, but he’s rarely here. Munchkin could probably be taught how to do it now, if we had a working mower.

We’ll get it figured out, I’m sure. We’re scouring Craigslist and Marketplace for used mowers. Once we find one, Mom and I can tag-team to get through it despite our physical challenges. Antonio is helping as much as he can. Something will come along for me job-wise that will make all this easier and give us some breathing room. I do still have a “village”; it’s just different now… little more digital than hands-on.

I used to hate how much everyone in my small hometown was always in my business.

But then again, I never had to worry about the grass getting cut.

Round Two

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Friends:

Something has been weighing heavily for a few weeks now but it was not my story to tell. However, my dad recently chose to share his story, so I can now share as well.

Two months ago, my dad was diagnosed with esophageal cancer. Several appointments and tests later, we now know it is a dangerous form of adenocarcinoma, Stage III, with involvement of one localized lymph node.

Dad just officially retired a couple weeks ago, which had, of course, been planned all year; we just weren’t expecting his retirement plans to be consumed with cancer treatment.

He began radiation therapy today, and chemo starts tomorrow. He will have 5 and a half weeks of these treatments, followed by a two-month “break” before they perform surgery to remove the malignancy. The surgery is extensive, essentially removing the majority of his esophagus (plus that stray lymph node), and then using the upper portion of the stomach to create a new digestive track. The recovery will take several months at best.

For those who don’t know… this isn’t my dad’s first rodeo with cancer. He was diagnosed with non-Hodgkin’s lymphoma in 2007; he was successfully treated and has been in remission for 10 years. But they say that if you’re going to get cancer, NHL is the kind you “want”, as it has the highest successful treatment rate. Esophageal adenocarcinoma doesn’t carry the same optimism.

Fortunately for Dad, it was discovered before it had metastasized, which is one reason for its lower recovery rate. His oncologist believes that with This aggressive treatment plan and a successful surgery, Dad’s odds of survival are 65%. That’s a helluva lot better than the normal 25% odds of someone at Stage IV.

If you know my dad, you know he’s one of the strongest people I’ve ever known. He is brave and otherwise healthy, which is in his favor. He has a good care team in place, friends in Colorado to help him, and a family (including a brother who is an MD!) who are supporting him completely and will be helping as needed. Right now, we are asking for your prayers, thoughts, healing energy, and positive vibes as we tackle this horrible demon yet again.

P.S. Yes, my Munchkin knows what is going on with his grandpa. We decided that he was old enough and this was too serious to keep from him. So far he’s handling it well, but keep him in mind as well as we face the weeks ahead. He has a big heart for a little guy, and he loves his grandpa. They are looking forward to a “boys-only” Rocky Mountain camping adventure once Grandpa is well enough to go… a retirement promise that Dad really wants to keep.

My dad, The archaeologist, teaching a session in Colorado

Triggered

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The news is getting to me this week.

For those of you who don’t know my story… when the Munchkin was five years old, I was sexually assaulted on a first date. Now, I’m no idiot. I had done my homework: I checked public records on the man. I Googled and checked social media. Professionally, he was who he said he was, and he had no criminal record.

But that night, I broke my own rule and went to his house. And I paid dearly for it. It was eight days before Christmas.

I didn’t report it.

Not to the police… he warned me (via text message and email afterwards) that it would be my word against his. And who would believe me, a poor single mother, against the word of a well-established financial professional?

In a moment of overwhelm, my outcry witness was my ex-husband. He was the only one who ever saw my bruises in person. And yet, a week later, he told me that he would use the fact that I had had such an “error in judgment” to prove I was an unfit mother and take out son away from me.

I later told my pastor at the church I attended at the time. His first question to me was, are you sure you’re not pregnant? Not was I hurt, or what did I need… his concern was whether I was “at risk” of an abortion.

I didn’t told another soul for three years.

These days, my family knows. I talk about being a survivor. The statute of limitations had passed, so nothing will ever happen to the person who attacked me. On the day the statute expired, I burned all the clothes I’d worn that night. I can read (most) articles and have considered volunteering for our local women’s shelter. Sometimes I can even watch episodes of SVU (which used to be my favorite show, before he took that from me).

So the story about Brett Kavanaugh and Christine Blasey Ford shouldn’t bother me… except it does, for one detail of her story: his hand over her mouth.

You see, that night I struggled to get away until he pressed his forearm over my neck, choking me. At that moment, it became all about making it home alive. My son needed me to get home. I had to survive.

Nothing triggers me like a reminder of that instant. Breathing as best I could with an arm compressing my windpipe while I tried to hold still against the blows of a man who had no concept of a safe word or consent.

I believe Christine Ford. I have been there. And I’ve spent this whole week wondering what I would do if, some day, the person who attacked me were ever to be cast into the public eye. Would I be brave enough to come forward? To try to protect other women and the public? I already sometimes regret not having reported him. I did what I had to do to protect my child. I later sought trauma counseling with a RAINN-trained therapist. I found an attorney who could protect my from my ex’s empty threats.

But reading all day long every day for a week the back and forth of the Kavanaugh story and how so many people think “she waited too long” or “she’s just looking for attention” or “she must be a Dem operative trying to throw the nomination” or “he was too young to be responsible” or “that was so long ago, don’t let it ruin his future”… it’s awfully hard to fight back the flashbacks when the reminder is everywhere.

Christine Ford was doing what she had to do to protect herself and keep living. She tried to forget (like me), she built a good life (like me), and she moved on as best she could, finding a healthy relationship with a good man (like me). I honestly don’t think the politics matter one damn bit. If it were me, I wouldn’t care if the patron saint of my political party were the culprit: someone has to stand up for us women and survivors and potential future victims.

Our culture lets men get away with behaving badly. And it’s bullshit.

So this week, I’m triggered.

And I believe Christine.

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.

“Hi. Welcome to our town. I’m glad you’re here.”

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Tonight, Munchkin and I joined the “welcome line” at our student union.

This was the second time this week that the Office of International Services hosted informational meetings for our students, faculty, staff, and community who are affected by or concerned about the recent immigration ban. A group of people organized a team of volunteers to come line the halls before and after each info session to pass out snacks and hugs… to show these frightened “kids” that we are glad to have them as part of our university family and that we will stand up with and beside them.

I was SO proud of Munchkin tonight. He held his sign, shook hands, introduced himself, and spoke with confidence. Rather than being intimidated by those who looked or spoke differently, my Aspie was much more worried that he was making sure that he was showing his sign to the “right ones” (meaning the guests rather than the staff and volunteers).

Munchkin has been sad, worried, and maybe even a little angry since November 8th. I keep telling him that what we do now is to use our voices to stand up for people who need it. He seems scared. I won’t lie: I am, too. But I know that, if I want to teach him to be able to take a stand, to care for others just as much as we do ourselves, then he needs to see people (including Mom) who will look fear, hatred, and injustice in the face and say “Love wins.”

So far, we had just talked about the things going on around us. He knew I joined the Women’s March in Indianapolis. We’re talking about the March for Science (Munchkin LOVES science). But this was his first ‘official’ social activism event. I let him decide if he was ready and felt comfortable going, and he did great. I wish I could have captured the smiles on the faces of the students who stopped to talk to him, to thank him for being there tonight.

A while back, I did some sociological research into the failure of the “colorblind ideology” of the post-Civil Rights era… the well-intentioned philosophy that children should be taught to be “colorblind” to race. Unfortunately, more and more studies are beginning to show that this precept has backfired. It is but one reason we are finding our beloved republic in the state it’s in: fostering an undercurrent of racism that many of us believed – until November 9th, 2016 – to be a thing of the past.

But there is hope. Four generations ago, Munchkin’s ancestry included a “Grand Master” of the local Ku Klux Klan. Today, my child approached a dark-skinned young woman in hijab and, while carrying a sign that said “I’m glad you’re here”, confidently introduced himself, and asked if she would like a cookie.

This is how we change the world, folks. We don’t ignore race, color, or creed… we embrace it, and we teach our children to be “woke”.

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?