parenting · running

Staying Active in Order to to Stay Active

It rained this weekend, a socked in, chilly spring rain. So this afternoon when the sun finally peeked out we had plenty of stink to blow off. I hauled the boys outside for a rollicking game of frisbee with a little tug-of-war with Meg and fetch with Abbi thrown in.  

We shared some laughs, mostly courtesy of Meg, and Alex taught me how to dab and nae nae, which evidently means I’m almost as cool as Betty White. (Apparently I have some work to do).  

It was bliss

I kept thinking that this is what life is really about. Horsing around, laughing and making memories together. 

And it occurred to me that I want to keep doing this kind of thing. Not just until my kids are grown, but as long as there’s breath in my body.  

I took a moment to deeply appreciate today, realized that I am not guaranteed another second here, and yearn for the ability to continue to create and enjoy moments like this.  

It’s at the core of my passion for exercise. Activity begets activity; I stay active so I can stay active. When someone suggests going for a hike, I want to be the first to don my boots, not only now, but for as many years as can.  When I see those videos of octogenarians running marathons, I don’t just find them inspiring, I want to do it. 

Every single step I take today is an investment in the steps I want to take next year, and every year after that, hopefully well into my 80’s or 90’s. And every single step I take today is a return on the investment of last year’s steps.  

Lastly, movement is an act of gratitude. Gratitude for my health, my ability, my strength. It’s not lost on me how fleeting it all is, and that my ability could be altered this very day. While I do hope to maintain it as much and as long as humanly possible, it’s not entirely up to me when or how it will no longer be possible. So today, while I am able, I will be active as an act of gratitude and investment. 

dog · parenting

Or What if I Simply Shed The Regrets?

I almost did it today. 

I was this close!!

I got most of the way through the day without swearing. 

And my house is pretty tidy, if you don’t look to close. 

The laundry is washed and dried, it just needs folding. 

Our meal was really healthy…leftovers. 

I got my self care in…while doing Ben’s flush and getting him snacks. 

I got my dogs out for their walk…after they were home alone for hours. 

The bills got paid!  (This one I actually did!!)

And I never feel quite adequate. 

And I always feel like I monkey around too much. 

And when I spend an hour a day exercising I feel like I should be more industrious.   And when I’m industrious I wish I had taken time for a workout. 

When I take the time to repurpose a chair I regret not packing (or cleaning or being more productive). And when I spend hours packing I longingly look at the chair I’m dying to paint. 


(The chair got painted by the way)

Most days I could go on like this infinitely; world without end. 

The other day my sister jokingly called the story of her life “Choose the regrets you can live with.”  (I believe she meant large scale regrets, and I’m totally taking liberty with it). 

Choose the regrets you can live with. 

I paid the bills, because that’s a regret I know don’t want to live with. 

Long term, I’m not willing to regret a life without regular exercise. 

Long term, I am willing to accept a never-quite-tidy-house.

I’m willing for some things to take the back seat in order to have the time and energy to nurture my marriage and my children  I’m willing to let some things slide in order to stay emotionally and physically healthy enough to manage our household   

When I look at life through that lens, it’s easy to decide what gets priority.  Myself, my marriage, my kids, in varying order depending on the circumstances. 

It might take some getting used to, deciding to just suck it up and live with certain regrets. It seems I’m awfully good at wallowing in them instead. 

And so far that’s gotten me a grand total of nowhere.  

Except sapping my energy. Or beating myself up. Don’t forget wasting time agonizing over taking care of myself. 

Because that’s productive. 

Ya know what?  I’m pretty proud of my chair. After a workout my brain is organized, and I’m more effective in my tasks.  

So what would happen if I simply shed the regrets and listen to what I know my family and I need…with a cuss word thrown in here or there for emphasis. 

parenting

Am I The Only Mom Who Doesn’t Dig Mother’s Day?

I like the idea of Mother’s Day enough, I guess.  It seems like a grand plan to set a day aside to recognize the matriarch of the family, but on this, my 19th Mother’s Day as a mom I’m coming out to say I just don’t give a hoot about it. 

For starters I’m completely uncomfortable with any special recognition as a general rule. It makes me queasy. But if I don’t get it on a day set aside for it, well that’s yucky too. 

And I hate the pressure. I want to recognize my own mom, but what do you get for a woman with distinctive tastes who has had over 70 years to obtain anything she might fancy?  The usual hanging flower basket, or should we mix it up with a Starbucks gift card this year?

Here’s the thing, I know I’m kind of a badass, and while I enjoy occasional kudos, I prefer the impromptu type over obligatory.  So save the love for the day to day moments of good and bad. It’s a lot more meaningful to get a spontaneous hug and “thanks mom” than a cheesy card with a photo of still life flowers. 

But I can get behind a family brunch with some tasty treats, so I’m focusing my efforts there.  Because anything that promotes consumption of chocolate is a movement I can support.  

parenting · special needs parenting

If You Happened To See Us In The Store The Other Day

You might have wondered what on earth was going on.  We stopped briefly to get cupcakes for Alex to share with his friends at school for his birthday. I zipped up an aisle to get some flour to fry up some morels and Ben lost it. I wasn’t sure what the trigger was, but since we had what we needed, I hurried to the checkout lane and tried to distract Ben, which didn’t work. At all. 

I debated the best course of action and decided that Alex deserved the cupcakes I had promised him, come hell or highwater. 

I herded Ben over, hoping to contain him in the lane, but that didn’t work either. Ben kicked Alex, angering him, then lashed out at me. 

We managed to get our things paid for and tried to leave, but Ben froze. 

I wound up wrapping myself around him, hauling his 85 lb. thrashing frame across the full parking lot to the van, where Alex waited, having gone ahead. 

Ben’s meltdown lasted the 10 minute ride home, then a solid half hour (possibly longer) once we got home. 

I found out when we got home that Ben had spotted birthday cakes in the aisle with the flour and wanted to choose one for Alex. 

Had I known I would have just let him.  

If you’re wondering why I didn’t punish him, it’s because it doesn’t work. Did you happen to see the movie “Rainman”?  If so, maybe you’ll remember how upsetting it was to Rainman when Charlie got angry. It doesn’t work, it doesn’t help, it just escalates an already out of control situation. 

If you’re wondering why I didn’t just walk out, I knew when I walked in that there was a certain likelihood of Ben having a meltdown, it was a calculated risk, and I walked in prepared to follow through and get Alex’s birthday treat. 

If you’re wondering why and how I stayed calm, it’s from years of practice, and because “low and slow” is what keeps things from getting worse. I will admit that sometimes it’s harder than others to keep my cool, and that sometimes I don’t, but when possible, it helps. 

If you’re wondering if there was something you could have done, that’s a very good question. Maybe. Sometimes an unexpected occurrence, like a stranger stepping in, aborts the meltdown, but it’s equally possible that it could have escalated things. 

If you suspect that I’m a crappy parent, some days I am, and some days I’m a pretty stellar parent, and most days I’m fairly decent, just like most other parents. My parenting isn’t the cause of the meltdown though, those are a complex combination of factors that I only wish I could control. 

If you think he’s always like that, he isn’t. Ben is a complex and dynamic human being. Sometimes he has meltdowns, sometimes he’s so sweet he melts my heart, sometimes he’s feisty and funny, and there are oh, so many more adjectives could describe him. You saw a snapshot. Just like you can take a photograph of an attractive person that catches them in an ugly moment, you caught a rough moment in time. He does have those, but they don’t define him. 

If you feel sorry for him, us or me, please listen. Compassion and empathy for a challenging situation are welcome, but we don’t need pity.  We need acceptance and pity won’t get us there. We need to keep giving Ben opportunities to go out because the less he does it the harder it gets. So we’ll keep taking these chances and sometimes he’ll do okay, and others he’ll have meltdowns. For his benefit and everyone else’s, we’ll keep going out, because isolation isn’t an option. 

Here are some photos of Ben on happier days. And when you look at them I hope you see how worthy and treasured he is. 

parenting · special needs parenting

Some Middle School Girls Made Me Cry Today 

Alex’s choir went to the state choral festival today. I met them there and observed their stellar performance. But I observed so much more. 

I drove Alex there myself for a variety of reasons best summed up by saying that life is complicated and that was the simplest solution. As such we were early, because I’m always early, so we sat together in the foyer awaiting the arrival of his choir. When they entered, Alex hesitated, but his dear friend Maddie was at the front of the group and when she saw him standing there a smile lit her whole being (and as a stunningly beautiful and dynamic young woman, Maddie’s smile was something to behold) then she beckoned for him to join her, he glanced at me for approval, which I granted, and jetted over to join her. She clasped his hand as they took off with the group for warmups. 

This has been standard since Alex joined the choir. Maddie had participated in the LINKS program in elementary school, and every time I see her she exudes warmth and friendship toward Alex.  I’ve seen it before, but I never quite get over my sentimentality about it. 

Then, after their performance, they filed into the seating area of the auditorium. Alex was a bit confused about which direction to head, and I watched him from afar with anxiety building. In familiar areas Alex is independent and confident, but in this new territory he appeared uncertain and hesitant. I constantly waffle about how much support to offer since independence is our ultimate goal for him, but from where I sat there was nothing I could do anyway. I watched, wondering if he’d get frustrated or upset, but before I could even begin to fuss, another young lady took his hand and escorted him in the right direction.  Again, when it was time to go, she glanced toward him and took his hand to escort him in the right direction. Though I recognized her, I don’t even know her name.


As I observed, I couldn’t control the tears. 

All parents carry some degree of concern ofr fear over relinquishing control of their children in the world, but that universal emotion is magnified by disability. Alex is almost 15, but he’s as innocent as a first grader. He’s going into high school but he reads at a second grade level. He has a young man’s body, but the spirit of a boy.   He’s on a path toward independence, but it’s more meandering than average.  

As he navigates his way to maturity and independence, there are gaps along the way. Those gaps are worrisome to us as his parents, but today I saw his peers recognize and step into those gaps, of their own volition. 

And today I am encouraged that his path, though littered with hazards, is also sprinkled with helpers. Helpers for whom I am at a loss for words to express the gladness they bring to this mom’s soul. 

And I am grateful to the parents who teach and model for their children acceptance and inclusiveness, because their children are changing the world. 

parenting · special needs parenting

Why I Won’t Censor My Children’s Feelings 

“Don’t let her say that!”

Hannah was being frank about her feelings about our family situation. It obviously bothered the listener. I don’t recall Hannah’s exact words, but the were not insults, were not made in an angry tirade, and included no cussing. It was just an honest assessment of our current situation. 

Our situation isn’t always pretty. Hannah and Alex get the scraps of our parenting efforts leftover after Ben devours his feast. While Hannah is empathetic, thoughtful, kind and loyal, she’s also honest, and quite frankly, sometimes it outright stinks to have a sibling with enormous needs. 

So I considered her statement and voiced my approval. She was right, after all. 

I can’t fix the stress and strain in our family. It’s hard, not only as primary caregivers, but for children whose parents are burned out from the vigilance it takes to meet complex behavioral, developmental and medical needs.  I cannot count the times we have been unable to do some totally normal thing because it’s impossible to juggle one more thing. Or the times that we promised something we ended up unable to deliver because a high priority issue came up. 

Sometimes Hannah and Alex take the filter off and tell it like it is. And I wholeheartedly allow it.  

When kids are little we tell them to “use their words” to express frustrations, rather than acting out. When the older kids vent to me about the stress and disappointment of constantly being displaced to accommodate their brother, they’re using their words. Isn’t that what I taught them to do?

Sometimes their words sting. It’s difficult to accept that the reality of our family means that 2 out of 3 children usually get a crummy deal. I don’t like to hear my parenting failures spelled out in the vents of my kids, and sometimes they point out things that really sting. 

But if I shut them down, where would they go with their discontent?  Isn’t it better for them to have a safe outlet, a parent who adores both them and their complex sibling, to hear them out and bear witness to their hardships?  If I censor them, will their vents build into resentment and bitterness that is buried instead of expressed?  I’m afraid so, in fact I’m pretty certain. 

I believe that counseling would be a better option, but let’s just add that to the list of things I’ve failed to accommodate for Alex and Hannah with because the need isn’t so overbearing that I’m forced to act. 

I let them vent because I need to vent too. I listen to them because validation is my favorite thing, and I want to pay it forward. I don’t know how it feels to be Hannah or Alex, but I do want them to tell me!

advocacy · parenting · special needs parenting

Autism Awareness:  Autism Related Anxiety and Obsessive Compulsiveness 

There’s this thing that happens. When Benjamin knows he’s going somewhere his anxiety skyrockets and he perseverates until he leaves. 

So, yesterday when he went to Grammy’s house, we told him when it was time to put his shoes on.  Even though he loves going to Grammy’s house, from the time he finds out he’s going until the car is under way, he cannot avoid an anxiety attack.  As soon as we leave his world is back in order and he’s just ducky. 

This goes for any outing. 

The anxiety used to cause vomiting, but thankfully now it’s only gagging and retching. 

I suspect there are a few factors playing into this. The perseverative behavior of autism, the inability to tell time, which is truly a complete incapacity to understand the flow of time at all, and the intolerance for having any need go unmet.  It makes for tricky parenting. 

In response we go into ninja mode. 

Ninja mode means that we sneak around and go to great extremes to avoid raising Ben’s suspicion that we might be leaving. For example, for a visit to our new house I did all the packing while he was doing his flush and seated on the potty for an hour. 

It’s a high stakes game, because if we slip and he figures out that we’re going somewhere we get stuck in the anxiety cycle of him asking repeatedly “Go bye bye?”  Or if he understands the destination, “Go Grammy’s?” Or “Go doctor?”   It happens a few times a minute from the moment he realizes we’re supposed to go somewhere until he is out of the driveway, and is punctuated by his retching and gagging. 

When such a drastic error occurs it’s often best to just leave the house and drive around until it’s time to arrive at our destination. Distraction rarely works. Picture schedules don’t help, and once the anxiety is triggered there is no going back until we leave. 

Anxiety disorders are common in people with autism, as are the obsessive compulsive or perseverative behaviors exhibited here.  This is just one of Ben’s flavors of autism/anxiety/obsessive compulsiveness, one that significantly impacts his quality of life and ours.  Ben has an unspecified anxiety disorder that has some qualities of separation anxiety plus his own little spin of anticipatory anxiety. While he has some significant obsessive compulsive behaviors, he has never been diagnosed with the disorder. 

Autism is a spectrum disorder and presents differently in each individual, this is just a brief illustration of how autism impacts Ben. This is why supports and therapies are crucial, because it’s the best way to build his tolerance for normal daily activities so that he can live a full and complete life with autism rather than being isolated by it.