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. 

special needs parenting

Dive Deep, Then Swim To The Surface 

Resilience. 

I’ve been told I have it in spades, but when pressed I’ve been unable to explain how I continue to bounce back, time after time. Though I’ve lacked the words to express it, I’ve long known the only way I keep functioning is to deal with the shit. 

I’ve heard the expression that if you stuff your feelings it will be like trying to hold a beach ball under water. It simply won’t work and the deeper down you push the more force builds up and the more explosive the emergence will be.  

But what is the alternative?  

For me it’s the deep dive. 

I’m not sure I even realized it until a friend used the phrase. The aha moment was monumental, a single phrase to sum up my whole life’s coping mechanism. 

Whenever anything happens, I do a deep dive, then swim to the surface. And it works, every time

What is a deep dive?  Well, it comes naturally to me. When life events transpire, I cocoon myself into my mind, and think and feel and analyze, intensely. It’s almost too much to bear, the pressure, the lack of oxygen, the complete immersion in the moment, but it doesn’t last. It can’t last, I wouldn’t survive for long under those conditions. 

When I cannot bear it anymore I look up and swim to the surface. 

Once to the surface I gasp for breath, orient myself to the surroundings, and pick up where I left off. 

For me it works. Reliably. 

If I try to skip the deep dive, I tread water until I’m depleted, going nowhere, the deep dive is the critical first step in coping with anything. Everything. 

It works for me. It’s essential for me. 

special needs parenting

Moments of Unexpected Grief

As we drove up the hill to my parent’s condominium for Easter on Sunday, one of those moments happened. The trigger was tiny, ridiculous, but there it was. A toddler walking with his dad, holding one of dad’s fingers, going at a turtle’s pace.  And there it was, as if it dropped from the heavens into my heart, sorrow, and a tear, quickly rubbed away hopefully unnoticed by anyone but me. 

It was one of those unpredictable moments of grief that crop up along the way when you parent children with disabilities. Why did that sight get to me?  Because we did that exact same thing with oldest child, Hannah. The child who sat through church and then has to wait for dinner on a holiday, and they’re restless and buggy, so you take them out for a little walk to blow off the steam. It was a totally normal parenting moment. 

And a moment I never shared with my boys.  

Alex could walk around that age, but going for a walk was out of the question, and Ben didn’t even take his first steps until he was well over two years old. 

When we found out Alex had Down syndrome when he was born we took the time to grieve the big stuff and gain perspective, the big stuff isn’t sneaky, it’s right there in front of you, demanding to be dealt with. It’s the minute, every day moments that sneak up on you with grief that’s almost entirely unpredictable. 

How would one expect, when carting an 11 and almost 15 year old to Grammy’s house to be struck with a moment of grief from early childhood.  Even though it can be a giant pain in the hiney to have to manage a restless toddler during a long day of holiday celebrations, it so often happens that during those moments the real sweetness of parenting occurs. That time he first sees a frog or picks up a stick which, during the course of the brief walk, becomes all manner of tools. The moments of little joys that are often remembered long after all the egg hunts and Easter dinners become almost indistinguishable in our one from the next in your memory. 

Then there are the moments you don’t realize you’re missing until it smacks you in the face, with no advance warning, and that is the ongoing grieving of parenting children with disabilities.  You can go weeks or months without ever feeling a twinge, but there’s always something beneath the veneer that is waiting to be revealed, with the most uneventful of events. Like seeing a father and son out for a perfectly normal walk.  

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!

special needs parenting

What Does Real Self Care Look Like When You Parent Complex Kids?

I’m getting a mani-pedi today. If there’s a poster for self-care a mani-pedi would be on it. It’s relaxing, makes you look better, and it’s a couple hours away from the grind. The bonus is that I have a couple of gift cards to offset the cost so it’s not even a ding on the budget. 

As spring arrives I will take pleasure in my beautified bare toes and most certainly ruin my mani by the end of the day, but that’s not the point. The point is the break, the focus on myself. A much needed boost to my spirit. 

But is it ever enough?

I believe in self-care, truly I do, but (you know what they say about “but”, ignore everything before it) it’s like offering a candy bar to someone suffering from malnourishment. It will taste great and give a momentary pause to the pangs that rumble nonstop, but it will do nothing to correct the underlying void. A malnourished person needs not a treat, not a single meal, but access to long term sustinence. 

And the full time parent of complex kids doesn’t need a mani-pedi. It’s a candy bar that will only quiet the pangs momentarily. 

What is needed, truly needed, by parents, especially the primary parent of complex kids, is much wider and deeper than a few hours of self care can begin to address. When you consider that moms of autistic kids have stress levels akin to that of combat soldiers it becomes apparent that a brief outing isn’t even beginning to address the issue. It’s a bandage on a hemorrhage. 

What is necessary is wraparound services. Respite, extended school years and more. 

We recently found out that Ben was approved for the Children’s Waiver Program. This program will provide for him all the benefits of Medicaid, despite our income being over the threshold, as well as respite, Community Living Services (someone to help Ben learn how to do things that most people take for granted, like tolerate an outing to the grocery store). When getting the news of approval I felt like a someone took me by the hand, showed me a farm with a garden full of bounty and a barn full of animals that, if well cared for could nourish our whole family indefinitely.  

I’ve been told that the church or private charities should step in. Idealistically I agree wholeheartedly, but I have yet to find a church or charity that is equipped and capable of stepping into the enormous gaps that families like ours have year after year. 

It takes interventions like the Children’s Waiver Program to make a difference in the lives of families like ours, there’s really no substitute. 

I’ll go get my mani-pedi today, and it will be a treat, but it won’t satisfy. It won’t fill the void and I’ve learned not to expect it to be enough. I’m beyond grateful to anticipate finally having the resources we need, but at the same time, I look at so many other families I know, moms who live as combat soldiers who need it just as much as we do. 

We need to do better. 

special needs parenting

My Love Letter to All those Moms of Really Tricky Kids

When I found out that my son was born with a disability, I felt isolated and alone. As his mother, I landed in this category of different.  As much as I embraced my child and his disabilities, I was the mom who spent hours a week with Early Intervention and had a bookshelf dedicated to my child’s needs. In those early days I felt a bit lost, alone on my parenting path. But along the way something remarkable has happened. 

Then we hosted a parent coffee for other parents of kids with Down syndrome when Alex was an infant and only one couple showed up. Their son was just a smidge younger than Alex, and we spent the evening exchanging stories. For the first time Mike and I shared some of our insecurities about our new roles as parents of a child with a disability, and so did they. And suddenly this different path felt less lonely and strange. We had company, there was strength in the companionship there was something magical about finding this couple. We didn’t know it then, but they was the first of many people who would cross our paths on this complex parenting adventure. 

When I talk with most women, they try to understand, they ask questions, listen carefully and are sincere in their efforts to grasp what our lives are like. It’s necessary to have these exchanges so that others may know at least in a general way, what this different path looks like. But my role is that of an interpreter, always translating, life on this path that they will never actually experience and only ever see the tip of the iceberg, having no idea of the enormity of what lies beneath the surface, I often feel as if I leave them more puzzled than enlightened. 

Then, when I connect with another complex mama, everything fits. Instead of meager attempts to show them a snapshot of our lives, they’re finishing my sentences and nodding along. I don’t need to translate because she’s fluent in my language. Without even trying, she recognizes the vast enormity of the iceberg, because she has one (or more) of her own. It’s effortless, it’s as comfortable as as my favorite pj’s.  Sometimes I bring out the deepest, darkest wildest stories, the ones even close family members never hear, just because I can. The catharsis is epic, because when you find those moms, they can match the stories without even blinking. 

There’s nothing like it. 

I’m a validation junky. If it could be manufactured into drug form I’d need unlimited refills to ensure I’d never be without. Getting that connection, that understanding is a necessary as air and water 

I’m weary of the overuse of the word “tribe”, I’m not one for clichés or cultural appropriation, so I avoid the term, but I’m not sure there’s an adequate synonym. Mom’s of tricky kids are my tribe, my clan, my people. I could not make it through this adventure without them.  No matter what happens, no matter how odd I feel, whether I’m overwhelmed or overjoyed, I can count on those few people to just get it, to cry or cheer along with us, to share our joys and sorrows in true community.  

Dear moms of tricky kids, with every fiber of my being I am grateful to you. For your unconditional acceptance and unity. You are the sisters of my heart and I couldn’t do this life without you.
*Disclaimer:  While this is written by a woman to women, by no means do I exclude the fathers. The men on this road are just as valiant and worthy as the women, but by nature of being a mother, I do relate and connect mostly to other moms.*