Take my hand, my son…

Today was a really emotional day.

Mom and I spent most of the weekend in our hometown working to prepare my grandparent’s house for auction. The household goods were loaded into a truck today for the auction later this week, and we’ve been painting and cleaning for months now to prepare the house itself for sale.

We were already tired when we got back today. At one point, I opened a box of Christmas decorations while looking for something, and I was struck with a familiar scent that took my breath away… my grandma. I choked down the lump in my throat, because we had work to do. Family tension did nothing to relieve my emotional state during the afternoon. A drive home, groceries, and picking up the Munchkin, and we were finally home again.

But as it turns out, I wasn’t the only one feeling emotional today.

It was a rough evening for my Munchkin, who is struggling right now. He doesn’t want to go to his dad’s house, and yet he has an extra overnight this week (which puts him at dad’s for 6 of the next 7 nights). He’s tired of being stuck in the middle. He doesn’t understand why his dad and stepmom say such mean things about his mom and grandparents. He said he is afraid that if he tells his dad how he feels, he will just be punished yet again. He told me that he is worried that if he tells people how he feels that nobody will believe him.

There were lots of tears before bedtime from a boy who is afraid to hurt anyone, and yet is quite tired of being a pawn in this grownup mess.

He may be 13 now, and he may be just a couple inches shy of surpassing me in height, but sometimes he is still very much my little boy. He still loves to snuggle. We still have a bedtime prayers routine, without which he will not go to bed.

During that routine, when he has had a rough day, I still sing to him. Usually he wants “Too-Ra-Loo-Ra“, or “You are my sunshine.”

But tonight when I tucked him in to bed, this old song popped into my head:

Day is Done: Peter, Paul, and Mary

A sign? Maybe. All I know is that it felt like the right song at the right moment.

Earlier during his meltdown , I talked with my Munchkin about our “village”. That his village was going to get him through all this stuff with his dad. That he can trust these people around him, in the village that mommy has built for him, to believe his feelings, to listen when he talks, to help him face the hard times. That just like his favorite heroes Harry Potter and Percy Jackson… even though things won’t be easy, he won’t ever do it alone. That it will be worth it in the end, and that I, along with his village, believe that he will get through this.

Sometimes I can’t tell if I’m making him feel any better. Tonight was one of those nights. But I tried. God, I hope it sinks I to his heart and helps bravery rise up within him. After I just hired yet another attorney, and my own faith falters, I pray that when I said to have faith in his mom and in our village, that it planted a seed.

Sometimes, I’m not sure whether being the mom or the kid in the middle is harder…

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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.

On Behalf of a Grateful Nation…

Ed. Note: This piece was written both as catharsis on the loss of my grandfather, and as ethnographic research paper for Dr. Marvin Sterling‘s ANTH-E393 World Fiction and Cultural Anthropology class at Indiana University. It is both biographical and fictional. 

The sky is a brilliant blue. There’s a warm breeze drifting up over the hill from the river below. The beauty of this late summer day betrays the solemnity of such an occasion. I’ve always thought so. Some might complain about duty in the cold or rain or snow; to me, it always felt like the weather should match the mood. It’s as if the warmth of the sun is a slap in the face to a family in mourning.  Continue reading

Thoughts from the wee hours…

Living with a dog with a small bladder is like having a newborn again. You sleep in short chunks with multiple mid-night wakings. After having just climbed back in bed after yet another late night trip downstairs with Molly, I have so many random thoughts floating around…

• Note to self: I sleep better if I claim my half of the bed from an Equatorial perspective (top half) rather than a meridian (right half) perspective. At least with the dogs… not sure about the pilot. 😆 These days when the Munchkin is gone to his dad’s, I end up with the Pug and the Bulldog in bed with me, while the lab is in the dog bed in the floor next to me. Did I mention they snore? They all snore…

• I am so behind on writing and homework right now it’s not funny… and I’m having so much trouble forcing myself to actually work. But the end of semester looms… and panic is starting to become a daily feeling.

• I miss my pilot. The worst part of this time in our airline life is not knowing when I’ll see him again. He’s working so hard to get through this challenging point in his career… and I’m so proud of him. But it’s hard. For both of us.

• My mother is so freaking amazing… she cleaned and reorganized my office this weekend and I can actually work at my desk now.

• There’s something really special, after having been blessed with a best friend for 22 years, to having a relationship with her daughter.

• The money for the semester never seems to last through the whole semester. I think one thing I miss about working, besides having a social life, is just knowing there’s a paycheck coming.

• It’s only 38 days until Rocky Mountain Christmas vacation! Hooray! I’m so looking forward to Christmas with both parents and my sister. It will be good to be away from Indiana over the holiday, so close on the heels of losing my grandpa.

• I don’t like having a friend living with chronic pain… but I do appreciate having someone who understands where I live who I can text at any hour to commiserate. My sweet friend in Georgia is dealing with a mess of back issues. I hate hearing how she hurts, how the pain is getting to her emotionally. But it is so comforting to be able to turn to someone who gets what it’s like to live this illness life, who knows how it feels to feel like a burden to others, who really gets how frustrating this can be and how much you just want to go back to “normal.”

• I had grand intentions on doing the “30 days of Thanks” thing this year… but lately I’m struggling to find the good. Not that I’m not very blessed and incredibly “wealthy” by so many standards. I have a home, a family, a beautiful child, an education, food to eat… but as I fight my own body every day, sometimes just to get out of bed, you get trapped in this internal place where it’s very hard to get outside oneself and recognize all that is there.

• Hypocortisolism is no joke. At a time when my pain is relatively well-managed, nothing is more infuriating than having to rest (or nap) after just a few hours… and on the days I force myself to get up and go all day, to then have to spend the entire next day (or more) recovering. I feel like I’m sleeping my life away these days, and I hate it. Thank God for my momma, who is helping me keep it together for my Munchkin. I’ll be glad when my new treatment starts working, in the hope that I can stay awake for more than a few hours at a time and maybe start to feel human again.

With that, I think I’ll try to catch a couple more hours sleep before class… hopefully…

On Ma’s porch swing…

Today was a busy day. But I couldn’t let it pass by without taking a moment to remember my “Ma.”

My paternal grandmother would have been 85 today. She left us almost eight years ago… the unexpected complication of a perforated ulcer. I had already been thinking about her birthday, four days before mine, for several days. This morning, my Facebook memories brought up a story I’d forgotten. 

A couple years back, the Munchkin and I were having a discussion about cicadas. He finds them creepy. I told him that, while I don’t like the way they sometimes divebomb one’s head, and I do agree that the empty shed skins are creepy, that I love the sound they make… 

Hearing the sound of cicadas takes me back to my childhood. When I was younger, every summer I would spend a week in Southern Indiana with my paternal grandparents, Ma and Pa. There was usually a trip to Holiday World, hitting golf balls into the back field with Pa, walks in Cox’s Woods, visiting great-aunts, and sometimes a drive down to Springs Valley and to the tiny hamlet about ten miles down the road where my grandfather grew up, to be spoiled with a trip to the old five-and-dime store. 

But in the evenings, we would sit on the front porch, eating ice cream, watching lightning bugs and listening to the cicadas. I remember one summer in particular when one of the 17-year cycles emerged… one evening the cicada song was so loud Ma and I couldn’t hear each other talking, though we were sitting next to each other on the porch swing. 
I got to know my father’s parents more in the last five years of their lives than I had in the previous twenty. You see, they did something remarkable for me. 

We live in the Bible Belt, and I grew up in two large families which both observe Christian faith. And although my parents, long divorced, were (and are) much more liberal in the ways of modern relationships, our extended families remain fairly conservative. So, when I became pregnant at age 23 with no husband, I thought for sure that my grandparents would disown me. I truly believed that I would lose them. I was so afraid, I couldn’t even tell them myself, leaning instead on my dad to break the news. 

A couple weeks later, I came home from work to find a bag on the front porch. Inside were groceries, gas money, and a sack full of baby onesies. And a note, scribbled on the back of a receipt: “Sorry we missed you. Ma and Pa” That was just the beginning. 

Throughout my pregnancy, the Munchkin’s early years, and through my divorce, my father’s parents were wonderful. They weren’t the emotionally distant old people I remembered growing up with. They were affectionate, warm, and doted on their only great-grandchild. They bought clothes and baby things. They helped with groceries when money was tight. They were never wealthy people, but they were generous. It was a surprising and wonderful gift they gave me, to be able to know them differently in their final years. 

This is one of my favorite pictures of my grandmother. Not because it’s wonderfully composed, but simply because this is how I remember her: sitting on the porch swing and caring for her family. I wish I, as well as my sister and cousins, had had more time with the woman she was in those last five years. But I will always treasure the time that we had, and how they didn’t turn their backs on me when I needed them. Whenever I hear cicadas, I remember them, and I smile. 

Happy birthday, Ma. Love you always. 

Up on the Roof

These days I find I have less patience for big crowds. If I’m being honest, I think it is related to my fibro, and being afraid of getting into a situation where I’m in pain and stuck… I should probably work on that. But it’s the Fourth of July, and I promised my Munchkin fireworks. 

Now, we live less than 3 miles from the local high school where tonight’s show was happening. We also live up on top of one of the highest hills in the area. So I suddenly had an idea: Can we see them from the house?! I wonder… 

I ran the idea past the Munchkin… who replied, “Can we watch them from the roof?” After a moment of thought, I said, “Why not?” 

Now, before you all think I’ve lost my mind… We have a split-level home, and the roof is actually just one step over the railing from the second-story deck in the back. And it’s not steep. So at five minutes before showtime, we doused ourselves in insect repellent, gathered an old blanket and a bag of chips, and headed upstairs. 

I should note here that about two steps onto the roof was when I remembered how terrified I am of heights. Specifically, FALLING from them. Which is why, even with an easily accessible roof, my gutters are sadly neglected. I can be in a plane, I can admire a gaze across the skyline from a 48th floor window, and I adore balconies. But in any situation where I feel like I could fall, I freeze up. The Munchkin wanted to go higher onto the very top level of the roof. It’s literally one step up, with only about a 5/12 pitch. I’d be nowhere near the edge of the house. And it was closer to the end of the house nearest the high school. It would be the best vantage point if we were going to see anything. 

But I couldn’t do it. 

Luckily, just then a neighbor sent up a shell a couple blocks away that could be seen perfectly from the end where we were. Thank you, sweet baby Jesus, for literal signs from heaven! I gulped down a lump in my throat, ventured to the apex, and said “Let’s just sit right here.” 

As it turns out, we were either too far away, or it was too hazy, to see any of the town fireworks from our roof. It had rained just a couple hours earlier, and everything was still damp. I could make out distant flashes and the low rumble of echoing explosions, but that was it. Fortunately, some neighbors due south of the house were setting off some pretty decent ones, so we sat up there watching for about 45 minutes. 

During that time in the dark, my son’s mind was going a million miles an hour. Commenting on every noise we heard, every shape he saw in the scattered clouds, every sparkling mortar shell that flew into the sky. He made up a song about sitting on the roof eating tortilla chips. We even FaceTimed my sister, using one phone to talk and another to light our faces in the night. 

Of course, the Munchkin wanted me to keep taking pictures. It’s what we do. But armed with only my iPhone? We weren’t gonna get much. My hair was a mess. But we had two phones for light, and a big moon, so why not? In between bursts of color in the sky down the street, I snapped a couple shots: 

As the fireworks started to slow down, my son snuggled up against me and said, “Isn’t this a lovely night?” 

Yes, baby… it’s perfect. I hope you remember it forever, because I’m certain I will.